What was your life like before you received the COVID-19 vaccine?
In October of 2019 I was diagnosed with mild emphysema. No medicine was required and I immediately quit smoking after 29 former attempts. I was in need of a left knee replacement and had trouble walking. My former aerobic exercise was walking in the pool at the gym and pool strength training. This ended when Covid began. I was very sedentary at the beginning of Covid and began working with a Physical Therapist to gain strength so that, when it was safe to have elective surgery), I could get it. I was developing strength and endurance prior to getting my booster.
Describe the symptoms and the timeline of the reaction.
10/22/21 was the date of my booster. I was flu-like for two days and then felt better so resumed my PT walking and exercises two days later. Suddenly, I could only walk half the distance I could previously without getting extremely short of breath. The next day I could walk half again the distance. I went to our PCP and he ordered many tests for me including a stress echo-cardiogram. As I was about to begin the test the nurse came in and said they could not do it because my blood pressure was too high. (I had been on BP medication at a very low dose and maintained 130/80 on it for 12 years prior.). I asked what my BP was and she said 210/120! It did not come down over the weekend and my Dr told me to go to the ER. I needed two shots of medicine to bring it down to a reasonable - but still high - level. My PCP and the ER doctor told me to double my BP meds and to see my PCP the next day. My PCP got me an appointment with a kidney specialist and they had me add a new medicine immediately before my appointment. I underwent several tests and with increased medicine they have been able to keep the BP down to 130/80 or below. My PCP sent me to a pulmonologist. After a CT lung scan that didn't show that I had Pneumonitis, my pulmonologist began treating me for it because I had all the symptoms of that condition. I have been on various dosages of prednisone since then and now also take Methotrexate. I am still short of breath and need oxygen at night and whenever I am moving/walking any distance. My severe GI symptoms began shortly after that. I had terrible, sudden explosive diarrhea out of the blue which was most embarrassing. Also, I then would experience severe constipation. Off to a GI specialist. I had just had a colonoscopy in May of 2021 and had pre-cancerous polyps removed and didn't need another one until May of 2023. (That has been delayed until October as I finally had a left knee replacement and can't have surgery for six months.). GI Dr. did a physical exam, had me on Miralax and Citrusel and he has given me Dicyclomine capsules for when I have "blowouts." I am also following the FODMAP diet. I also have neuropathy in my feet and a bit on my calfs. I have balance issues as a result of this.
Describe the solutions that helped your symptoms
I have been to more specialists since this occurred than I ever have in my life. I am seeking alternative health through an organization in Brooklyn NY called Physio-Logic. They have done extensive blood work and GI testing. I am on supplements. In the course of getting ready for my knee replacement, my bloodwork showed a severe B12 deficiency diagnosed by a Hematologist. I have begun a course of B12 Shots and should see some results by July of 2023. The breathing is the biggest concern for me. Not being able to have any more boosters is terrifying to me and at the age of 68, I am a hermit. I haven't flown since Covid. My husband and I rarely go to restaurants for fear of contracting Covid. I no longer go to the theatre regularly or anyplace where more than 20 people in a large space congregate. I mask whenever I am in a Drs. Office. Blood pressure meds have worked. Stomach issues still arise. When we got the Flu Type A (even with a flu shot) my breathing worsened and was just starting to improve. The knee surgery set me back breathing wise due to weakness and I'm hoping it will improve so I can get off the prednisone (now at 5 mg daily). But I have no quality of life and I don't want to give up until I find solutions.
Which solutions were not helpful?
Well, the prednisone has worked to some degree. The addition of Methotrexate as an off-label use for breathing remains to be seen. The culturelle probiotic has helped some with the stomach issues at times. The increased BP medications have worked in lowering my blood pressure. Other than that, not a lot.
What would you like others to know?
I am so frustrated that - despite virtually every doctor and specialist I've been to- has had patients that are suffering from post-vaccine complications is not recognized or being researched by NIH, CDC, etc. There is a dearth of information available to patients and providers. I understand it is politically tricky with anti-vaccination still pervading our country. However, I am not an anti vaccination person and I know it has helped millions of people from contracting Covid and dying as a result. However, it is disingenuous of our government not to be research this with real research dollars. I tried to join a long Covid study and they wouldn't even consider me because I've never had Covid! I believe that all of this might be helped by IVIG infusions - exploration of Autoantibodies and enzyme2 (ACE2) research. Exploration of autoimmune mechanism that was triggered by SARS-CoV-w spike protein. I may be 68 years old, but I want to fly to California to visit my grandchildren. I want to find a solution to my breathing issues that don't involve me having to tour a portable oxygen machine around or use oxygen all night to sleep. I want to go to the theatre, movies. I don't want to feel like my life has been permanently changed due to a Covid booster reaction that no one is doing research on. I want our government to act transparently and openly with people, like me, who have experienced this.
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