Vaccine Injury of William Sandreuter
What was your life like before you received the COVID-19 vaccine?
Preparing to retire and lead an active, outdoors life.
Describe the symptoms and the timeline of the reaction.
1/19/22 Shingrix shot #1
3/22/21 Pfizer shot #1
4/13/21 Pfizer shot #2
5/20/21 Shingrix shot #2
5/27/21 pulmonary embolism
5/30/21 released from hospital
8/21/22 thyroid biopsy - results negative
5/30-12/27/21 ongoing nosebleeds, sinus inflammation, bloodwork inflammation markers high
12/02/21-6/10/22 treated at wound center for open wound at site of second Shingrix jab
1/19/22 rheumatology appointment - ANCA test results negative
3/20/22 broke shoulder
4/12/22 surgery to repair broken shoulder
5/21/22 vertical double vision (5hr)
5/21/22-5/29/22 increasing numbness in feet, progressing to hands
5/29/22-6/04/22 hospitalized for Guillain-Barre syndrome, Paresthesis. iVIG (Privigen 5 days) prescribed.
6/21/22 ER for severe leg pain
* numbness in feet and hands progressed through June
* around mid June became unable to walk unaided, unable to handle eating utensils/feed myself, strength steadily declining.
6/27/22 first Neurology appointment
6/29/22 EMG test showed nerve damage
6/29/22 & 6/30/22 iVIG treatments (Gammagard)
7/11/22-7/13/22 iVIG treatments (Gammagard)
8/08/22 urgent care visit for left eye keratitis - treated with Erythromycin
8/09/22 ophthalmologist diagnosis - inflammation of oil glands, continue Erythromycin.
8/12/22 hematology appointment - hemoglobin 6.7 - blood in urine
8/14/22 blood transfusion
8/22/22 colonoscopy & endoscopy - no issues identified, biopsy taken
8/25/22 - iron infusion to treat severe anemia
8/28/22 - right eye irritation treated with Erythromycin
8/29/22 EMG shows no further nerve damage, very slight improvement
8/29/22 iron infusion (Venofer) to treat severe anemia
8/30/22 PCP appointment - liver function panel indicates kidney function compromised, iVIG treatments in September cancelled
8/31/22 ophthalmologist diagnoses scleritis in right eye, prednisolone drops prescribed
* at this point my ophthalmologist (Dr. Richard France) took it upon himself to contact ALL of my providers to coordinate care, due to his perception of the seriousness of ALL my medical records. He went “out of his lane” on behalf of his patient - and this was the turning point for my treatment, though things got worse before they got better.
9/01/22 iron infusion (Venofer) to treat severe anemia
* 9/13/22 rheumatology repeated ANCA test, which came back positive. Diagnosis changed from GBS to Granumolitosis with Polyangitis (GPA, or Wegener’s), and treatment changed to 60mg prednisone/day. This seemed to address the systemic inflammation and anemia, and my strength began to very slowly improve. Still unable to walk unaided, use eating utensils, or care for myself in any meaningful way.
9/14/22 “pulse dose” Prednisone
9/27/32 - rheumatology prescribes Rituxan infusions - scheduled 10/13/22 and 10/20/22
* I had been participating in at home PT and OT sessions since July, with a goal of being able to walk my daughter down the aisle at her wedding in early October. Thanks to the large daily dose of steroids, I was able to use a cane (+my daughter’s support) to accomplish that goal!
10/08 walked (limped) my daughter down the aisle
* following this event I began feeling more tired than usual, but initially thought it was due to a long, exciting, emotional day. Instead of recovering, it got slowly worse.
10/12/22 ENT appointment, described tiredness to my ENT doc, who suggested I see urgent care. Urgent care diagnosed possible heart attack, I was fast track admitted to hospital.
10/12/22-10/27/22 in the hospital.
* congestive heart failure & AFIB
* CKD (chronic kidney disease)
* 2 cardioversions to get me out of AFIB (Amiodorone required)
* cardiology & nephrology coordinate on medications
* first Rituxan infusion on 10/20 while in hospital
10/28 released from hospital, 2nd Rituxan infusion
*from this point on, I stayed out of AFIB, and my strength slowly improved. Hemoglobin also improved.
December 2022 I began taking Avacopan (Tavneos) daily, in addition to periodic Rituxan infusions.
* began cardio rehab in December 2022, continued through end March 2023
* began PT at Maine Strong Balance in December 2022, continued through end April 2023
* Began skiing with Maine Adaptive January 2023 (I am a PSIA level III alpine trainer) using a “slider” (a walker on skis). By end March was skiing on my own.
*During this time strength continued to improve, and neuropathy in both hands and feet experienced extremely slow improvement also. Began to feed myself with difficulty. Able to walk unaided for short distances.
May-September 2023 - participated in cycling, paddling, pickleball, and golf with Maine Adaptive. By September I graduated from recumbent trike to a “real” 2 wheel bike on flat ground.
August 2023 - able to start driving again. Neuropathy in feet & hands still an issue, but functionally safe with extra awareness.
September 2023 neuropathy in hands slowly improving, finally able to perform self care following bowel movement (sounds silly but a big step forward in self sufficiency)
As of May 2024 my neuropathy continues to slowly improve in both hands and feet. My strength is also improving, helped by cardio and resistance training. I was able to continue skiing on my own with Maine Adaptive over the winter, and participated in indoor climbing last fall and currently.
I originally hoped for a 1 or 2-year path to full recovery. I’ve reset those expectations, and will be grateful for whatever level of recovery I’m blessed with, with no expectation of a timeframe for “full recovery”.
My perception based on this experience is that the pharma & medical communities know much less about the mRNA vaccines than we are led to believe. I’m thankful to have found this site, and hope to help others by sharing my experience,
Describe the solutions that helped your symptoms
* Avacopan/Tavneos + Rituxan seems to be effective. I’ll continue Rituxan for 2 more years, and may stop Avacopan by end June 2024.
* High doses of Prednisone steroid helped knock down my anemia and inflammatory issues. I’m off it since March 2024.
* consistent physical exercise at whatever level one is capable of supports both recovery AND mental health! I found mental exercise like reading, card games, board games (as opposed to internet surfing or TV watching) to be helpful. I also found comfort in creating music playlists in Spotify.
* Stay on top of your providers! Ask questions! Encourage them to communicate and coordinate! IMO many providers prefer to “stay in their lane” and as patients we must advocate for ourselves.
* If your treatment is not working ask about an ANCA test
Which solutions were not helpful?
iVIG didn’t help me, but is probably helpful with other immune system disorders.
What would you like others to know?
* now is a great time to consider faith and prayer - my faith grew through this whole process, and my prayers are being answered- seriously!
* consistent physical exercise at whatever level one is capable of supports both recovery AND mental health! I found mental exercise like reading, card games, board games (as opposed to internet surfing or TV watching) to be helpful. I also found comfort in creating music playlists in Spotify.
* Stay on top of your providers! Ask questions! Encourage them to communicate and coordinate! IMO many providers prefer to “stay in their lane” and as patients we must advocate for ourselves.
* If your treatment is not working ask about an ANCA test
