What was your life like before you received the COVID-19 vaccine?
I was healthy and active. My existing health conditions were scoliosis, rosacea, and dry eye disease. I did not suffer from fatigue or neuropathy and I could eat or drink anything I wanted. I could spend time outdoors or leisurely stroll around. I could sit in a chair as long as I desired.
Describe the symptoms and the timeline of the reaction.
3/16/21 - J&J Covid vaccine - feeling bad & severe headache by that evening with new onset of burning pain nose & in all sinuses 3/25/21 - Diagnosed with sinus infection by allergy dr. Treated with 2 weeks of ceftin & oral steroids. Never had a fever or nasal drainage though. 4/12/21 - sinus infection clear by slide per allergy dr. Eyes & ears still awful with some dizziness. Sinus & nose burning continued. 4/23/21 - Steroid injection at PCP for cont symptoms. 5/10/21 - Cleared by ENT with normal tymphanograms 7/15/21 – increased burning pain in nose and sinuses 7/2021 later in month - Increasing episodes of worsening fatigue 8/30/21 - CT of sinuses per allergy dr – normal (ordered because of my frequent visits for sinus pain & burning) / Honestly, I haven't felt completely well since getting the J&J covid vaccine. (The sinus burning & frontal headache / burning began with a vengeance the day I got it.) 9/18/21 - periods of heaviness & heart pounding & cold feet - too hard to even lift arms / too miserable to even watch TV 9/21/21 - negative covid test (only symptom fatigue) – persisting for days after with intermittent “lazy” feeling of right eyelid and some decreased vision in right eye 9/24/21 – lots more nose & sinus burning - saw allergy dr - no sinus infection per slide 9/26/21 - Fatigue severe - no activity tolerated - around noon I started to develop the sensation of difficulty swallowing on the right side of my throat. I also felt flu-ish and feverish, but had no fever. No appetite. I went to ER for eval. Eye symptoms were dismissed. Soft tissue neck CT with IV contrast was normal. Dx with “sore throat” and referred to neurology. 9/27/21 - increased dry mouth feeling / right throat still feels abnormal, like a lump or not working / tongue (especially on sides) burning most of the time 10/5/21 - Still having episodes of debilitating fatigue - meloxicam & tylenol help some / jaw tightening & right ear pressure / nose & sinuses & tongue burning 10/9/21 - fatigue still severe at times - meloxicam helps but not sustained / nose & sinuses burning / rear pressure & intermittent dizziness / right throat still strange 10/15/21 - nose & sinuses burning a lot more again 10/18/21 - onset of tightness across chest and feeling that I can’t get a deep breath / head feels too heavy to hold up at times (over last 2 weeks off & on) / right groin & hip flexor intense burning pain 10/23/21 – saw PCP - eval chest tightness & cont fatigue & increased right throat/ear/lower jaw discomfort - rx medrol dose pack 10/27/21 - still having episodes of right eye blurriness/laziness & tightness across jaw / right throat still feels strange / more right groin and right side abd pain 11/1/21 - cont CP & SOB / head feels so heavy, or just too weak to hold it up 11/10/21 - using soft cervical collar to help keep my head up when I can’t rest it against something / chest pain decreasing after medtrol dose pack 11/15/21 - lots of facial tightness & tingling / increased dry mouth to misery level 11/23/21 - Infectious Disease consult – dr suspects autoimmune disease vs vaccine injury – but released from his care 12/3/21 - everything burning but less than some days - steroids helping a bit 12/7/21 - face and jaw tightness at new awful level with weird sensation like strained or tingly - feels odd / tongue weird at times / abd pain & weight loss persists Throughout this major change in my health status, I have been evaluated by numerous specialists without a clear diagnosis. (Neuro x 2, cardiology x 2, allergy/immunology x 3, oncology, GI, ENT x 2, infectious disease, pulmonary, rheumatology x 3.) 4/29/23 Major symptoms remaining: inability to sit up normally for more than short (like 5-10 min) periods without excessive effort and increased weakness / my head is too heavy for my body or my neck is weak / chest tightness & feeling SOB frequently – suspected ANS dysfunction / inability to tolerate extremes of temperature or humidity – feels like I am suffocating – thus not going outdoors / burning pain in nose & face – most likely neuropathy. My body just hurts and my feet don’t feel like they belong to me. Skin biopsy positive for small fiber neuropathy. Severe brain fog. POTS symptoms are somewhat improved with compression socks, dietary changes, staying hydrated, & slow position changes. Rapid heart rate & low BP have improved over last several months also. Basically, I feel like I have the flu most of the time, but my temperature usually stays below 100.0. Weight loss stopped around 6/2022, but I lost a total of 40 pounds without trying. Steroids offer a brief boost & so far are the most helpful of all meds. Unable to function normally or work outside the home. Thankful to be alive, but not really living if that makes sense. I am isolated and still taking all precautions to avoid Covid or any other infection in my debilitated state. (I haven’t had Covid.) (Sorry for the length - most of this was copied and pasted from my self-report to VAERS.)
Describe the solutions that helped your symptoms
I am still desperately trying to get help. Honestly, I don't know what is helping and what may be working against me. I am just thankful to have had my eyes opened to the reality that the vaccine triggered my health decline, after being told for over a year that it was not. possible. Now I am seeing Dr. Peter McCullough and Dr. Procter for help with the vax injury. I very recently started hyperbaric oxygen treatments with Dr. Alfred Johnson. A very kind rheumatologist helped me some prior to finding these providers, but he was treating me as "seronegative" because my autoimmunity labs were random and inconclusive. The steroid shots and oral prednisone that he prescribed helped me hang in there. (Not so good for the osteoporosis that I developed though.) I have given up gluten, dairy, beef in an attempt to decrease inflammation.
Which solutions were not helpful?
It was not helpful to be diagnosed with anxiety or FND with a skin biopsy that showed small fiber neuropathy. Taking protonix for abdominal pain made me much worse. Attempting physical therapy caused a major setback.
What would you like others to know?
Please do your best to discourage anyone from getting these horrible shots. I have family members who are likely injured that just won't discuss it. It was very sobering to hear Dr. McCullough tell me that a booster (which numerous other doctors kept telling me to get prior to my realizing I was indeed vaccine injured) would have likely been fatal for me. Please report your injury to VAERS.
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