Received Sep 23, 2025
| Type | Name | Manufacturer | Dose | Lot | Route / Site |
|---|---|---|---|---|---|
| COVID19 | COVID19 (COVID19 (JANSSEN)) | JANSSEN | 2 | — | SYR / LA |
I complied with the mandate to be vaccinated and received the Johnson & Johnson COVID-19 vaccine and subsequent booster. Within months, my health collapsed. I was diagnosed with Cryoglobulinemia, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and most recently Chronic Immune Sensory Polyradiculopathy (CISP)?a condition so rare it is scarcely documented. These rare and debilitating diseases that have progressively eroded my ability to function physically, cognitively, and emotionally. CISP is a variant of CIDP that primarily affects the sensory nerve roots, causing profound proprioceptive loss, gait ataxia, and falls, often without motor weakness. Cryoglobulinemia is a rare autoimmune blood disorder in which abnormal proteins precipitate in cold temperatures, causing vascular inflammation, blood sludging, and peripheral nerve damage. Together, these diseases create a relentless cycle of pain, instability, and systemic dysfunction. Cognitive and Neurological Impairments ? Time conceptualization, concentration, and short-term memory are dramatically affected. I estimate 6% functionality in short-term memory, with similar deficits in multitasking and tracking time. ? Navigating daily life without losing or forgetting something is impossible. Interactive activities are overwhelming, and I often lose track of conversations, tasks, or even basic routines. Physical Limitations and Pain ? I feel a constant rolling sensation, a disconcerting unsteadiness that rarely eases. ? I am unable to walk safely on anything but a perfectly level surface. I fall 3?5 times per week, depending on terrain. A fall at the post office has led to making sure someone accompanies me in public. In June 2024, a fall caused a severe tendon tear, requiring surgery. Another fall resulted in a head injury, and others leaving bruises etc.. Continued unsteadiness and falls are physically and psychologically challenging. ? I can?t dance, turn head to either side, or look up without losing balance. ? I receive Gammagard IVIG infusions every 3 weeks, each lasting 5 hours. My functionality fluctuates depending on where I am in the treatment cycle. ? I experience daily incontinence, which adds to the physical and emotional burden. ? My vision is impaired, both near and far, making navigation and reading difficult. ? Standing for more than 10?20 minutes causes my feet to fill with burning pain. Sitting triggers pain down my thighs and into my calves and feet, which swell and burn. ? Any injury to a limb triggers a mirrored attack on the opposite limb. Repetitive pressure causes swelling and burning tissue pain. Even typing or intimate contact can provoke upper body flare-ups. ? My coordination is compromised, and I struggle with basic motor tasks. Emotional and Financial Devastation ? The emotional trauma is almost unbearable. Once fueled by a boundless enthusiasm for nature, work, and my beloved pets, I now feel my spirit fading as these sources of joy become inaccessible. ? I lost my job in the highly sophisticated space industry, a career that gave me purpose and pride. The loss of work, compounded by being denied benefits as an independent contractor, and still in appeal process, has left me with no income since December 2023. ? My home loan, retirement account, and savings are gone. Friends and family have helped as much as they can, but their resources are strained. My credit is maxed, and I now face the imminent loss of my home. These symptoms are not episodic?they are daily, progressive, and disabling. They prevent me from performing substantial gainful activity, managing basic household tasks, or engaging socially. I have fought to remain independent, but the progression of these conditions has made that no longer viable. Timeline November 30, 2021 ? J&J 1st Booster Mid-December 2021 onward ? Beginning of progression of disturbingly unusual symptoms January 2022 ? 3x visit with GP, then sent to specialist. 2022 ? Spine Specialist 2022 ? Dermatologist 2022 - Hematologist 2022 ? Neurologist 2022 ?DISESAE DIAGNOSIS (LAB): Procedure: Lab Draws Diagnosis: cryoglobulinemia, a disease suspected of presenting over underlying disorder not yet discovered 2022 ? Action: Referred to UCSF Hematology Program 2022 ? Referred to Neurologist April 2023 ? SURGERY Procedure: Abdominal Fat Pad Biopsy to rule out amyloidosis ? Anes- General. Diagnosis: Inconclusive July 11, 2023 ? SURGERY Sural Nerve Biopsy Procedure: Nerve Biopsy Sural with Allograft Repair Diagnosis: Chronic Inflammatory Demyialating Polyneuropathy Treatment: IVIG Gammagard 3x Kickstart, ongoing IVIG infusions (Gammagard administered every 3rd-week). August 3, 2023 ? SURGERY Breast Capsulotomy/Capsulectomy; Bilateral (Bilateral: Breast) Mastoplexy Periareolar (Bilateral: Chest) Sept 2023 ? Began IVIG Treatment 3x 3-day Kickstarts. Change to: 1x every 4th week. Change to: 1x every 3rd week Oct 2023 ? SURGERY Colonoscopy Dec 27, 2023 ? Lost income due to Inability to perform. Feb 2024 ? Applied for Federal and State disability benefits April 2024 ? Hard fall in garden injuring right forearm. GP Referral Orthopedic specialist visit in August. November 16, 2024 ? Terminated legal REPRESENTATION November 18, 2024 ? SURGERY Diagnosis: Severe tearing from fall in April 2024, and chronic scar tissue on undersurface of common extensor tendon, right elbow. Surgery: Debridement and repair of common extensor tendon right elbow, with partial ostectomy. May 27, 2025 ? REASSAIGNMENT DIAGNOSIS + DISORDER RESUMPTION (MRI?s (brain, cervical, thoracic, lumbar), LAB?s, BRAIN Study): Diagnosis 1: Reassignment of CIDP to CISP. Action: Schedule new MRI Brain with Contrast Diagnosis 2: Resumption of cryoglobulinemia. Action1: LABS ordered. Action2: Referring to Hematologist. Diagnosis 3: Mild Neurocognitive Disorder (provisional); Unspecified Depressive Disorder, Unspecified Anxiety Disorder, PTSD (by history); R/O Somatic Symptom Disorder. Action: Recommendations for treatment using various therapies to be reviewed with core team and patient.
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Sulfer based antibiotics
There are hundreds of documents from tests, labs, MRI's CT, Ultrasounds and surgeries (Sural Nerve Biopsy was the diagnosis determinor of CIDP/CISP). I have reports and test results if you would like copies.