Patient A Comprehensive Health History & Timeline
1. Patient Information
Age: mid-70s
Sex: Male
Height: 5'11" (180 cm)
Weight: 177-180 lbs (80-82 kg)
BMI: Approximately 25-26
2. Chief Complaints
Patient A experiences daily, progressive muscle weakness and neuropathic discomfort that significantly restrict his activities and quality of life. Extensive evaluations and treatments by several specialists have yielded no meaningful, lasting improvement or clear diagnosis to date. The continuing uncertainty—and fear of further decline—creates substantial physical and emotional burden for both the patient and his family.
Progressive, asymmetric muscle weakness and atrophy (L>R, esp. L calf), limiting function.
Progressive gait instability and worsening balance difficulties requiring a cane.
Inability to raise either arm above ~30 degrees (acute R arm onset June 2024, now bilateral).
Worsening cognitive function (short-term memory deficits, confusion).
Significant fatigue (though markedly improved very recently, since mid-April 2025, following initiation of HBOT and decreased exercise).
Peripheral sensory disturbances (numbness, pins/needles in feet/legs; prickly sensation improved).
Long-standing orthostatic intolerance (dizziness/tachycardia upon standing).
3. Key Findings
Abnormal Findings
Inflammatory / Cytokines: C4a 1096 HIGH; TGF-β1 3698 HIGH; MMP-9 509 HIGH
Auto-immunity: ANA 1:1280 Positive (HIGH titer)
Infectious Serologies: Coxsackie B Ab POSITIVE; HSV-1 IgG 35.3 HIGH; EBV EA IgG 19 HIGH; SARS-CoV-2 Nucleocapsid POSITIVE; SARS-CoV-2 Spike Ab 5931 HIGH
Coagulation: D-dimer 1.42 HIGH (during PE)
Monoclonal Gammopathy: IgG-κ MGUS (M-spike 0.5–0.6 g/dL); IgG Subclass 1 942 HIGH; κ/λ Ratio 2.79 HIGH (2018)
Neuro-degeneration Marker: p-Tau-217 0.68 HIGH
Muscle Enzyme: Creatine Kinase 400-900 U/L (persistently HIGH)
Other Serum: Chromogranin A 143.5 HIGH; lymphopenia on CBC
Toxicology: Antimony, Bismuth, Tungsten, Aflatoxin B2, Aflatoxin M1, DAS, Dihydrocitrinone, Fumonisin B3 ELEVATED
Liver / Kidney: Mild AST>ALT transaminitis; transient mild AKI (↑creatinine)
Imaging – Spine: Cervical MRI – severe C5-7 stenosis + myelomalacia; Lumbar MRI – severe L4-5 & L5-S1 foraminal narrowing + levoscoliosis
Imaging – Chest / Vascular: CTA Chest – extensive bilateral pulmonary emboli with possible right-heart strain
Electrophysiology: EMG/NCS – severe mixed sensorimotor polyneuropathy; active left lumbar root denervation
Muscle Biopsy: Quadriceps – moderate neurogenic atrophy (no inflammation/amyloid)
Normal / Negative Findings
Cytokines: IL-2 < 31.2 (normal); IL-10 4.1 (normal)
Auto-immunity: ASMA negative; Anti-contactin Ab negative; Neurofascin Ab negative
Coagulation Genetics: Comprehensive thrombophilia panel negative
Neuro-degeneration Markers: β-Amyloid 42/40 ratio 0.114 NORMAL; Neurofilament Light Chain 27.7 NORMAL
Endocrine / Adrenal: Cortisol 11.1 µg/dL normal; ACTH 26.9 pg/mL normal
Posterior Pituitary: ADH < 0.8 pg/mL (low-normal)
Genetic Testing: GeneDx hereditary neuropathy panel (2019) negative; Whole-genome sequencing (2024) negative
Amyloid Screening: Fat-pad & quadriceps biopsies negative for amyloid
Brain Imaging: 7 T MRI – only mild age-related atrophy; no iron deposition in motor cortex
Vascular Ultrasound: Right-leg Doppler – Baker’s cyst, no DVT
Infectious Serology: HSV-2 IgG negative
See the Comprehensive Test Result Spreadsheet for all biomarkers.
4. History of Present Illness
This mid-70s male presents with a complex, relentlessly progressive neurological disorder spanning ~15 years, currently without a unifying diagnosis despite extensive investigation. His primary concerns are debilitating muscle deterioration and, until very recently, overwhelming fatigue.
The onset traces back to 2010, coinciding with significant life stressors (financial crisis, business dissolution) and a severe Epstein-Barr Virus (EBV) infection, after which he developed Hashimoto's thyroiditis, chronic fatigue, and initial sensory neuropathy symptoms (tingling feet). His condition remained relatively stable until 2018, when progressive balance issues and tripping began.
In early 2019, following evaluations by three neurologists, he was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). IVIG therapy was initiated (Aug 2019), starting at 40g and escalating to 60g (2x every 3 weeks) due to worsening symptoms over the next few years.
A major decline occurred in May 2023, following a COVID-19 infection (February/March 2023), with dramatically increased leg weakness and impaired ambulation. By August 2023, neurologists questioned the CIDP diagnosis, suspecting spinal stenosis as a contributor. Subsequent cervical (November 2023: C3-C7 laminectomy/laminoplasty) and lumbar (March 2024: L4-S1 PSIF/TLIF) surgeries provided no neurological improvement.
In June 2024, while traveling, he experienced sudden onset inability to raise his right arm; this limitation now affects both arms (<30 degrees elevation). Concurrently, following transatlantic travel, he was diagnosed with extensive bilateral pulmonary emboli (PE) and left DVT, requiring anticoagulation.
Throughout 2024, muscle wasting (esp. L calf, quadriceps, scapular winging R>L), weakness, and fatigue progressed. IVIG was discontinued (Aug 2024) after 5 years due to perceived lack of benefit. Alternative therapies including stem cells (x4), young plasma (x2), and plasmapheresis (x2) in Fall 2024 yielded no improvement. Vyvgart (efgartigimod) was started Feb 2025, providing some relief from restless legs and paresthesias but no change in weakness, balance, or overall trajectory.
Recent status (late March/April 2025): The patient identifies his top two issues as fatigue and muscle deterioration. He began home Hyperbaric Oxygen Therapy (HBOT) on March 27, 2025, and reduced his exercise intensity around the same time. Within 2-3 weeks of starting HBOT (i.e., starting mid-April 2025), he reports a striking improvement in fatigue, feeling more alert and energetic. His previous fatigue pattern (worse in AM) reversed, now generally feeling better in the AM. Despite this very recent and significant improvement in energy levels, his muscle strength and atrophy remain unchanged and continue to be a major concern. He also notes worsening cognitive function more recently, with increased short-term memory loss and moments of confusion. His long-standing orthostatic dizziness/tachycardia persists. Sensory symptoms (prickly feeling) have mildly improved, but balance continues to decline. Symptoms worsen in cold climates (achy, tingly). A recent short prednisone pulse (early April 2025) provided temporary alertness/strength but is not a long-term solution. An experimental trial of Riluzole is planned for the near future.
Potential contributing factors: Include significant mold exposure (documented 2020 in NE home office, fall 2023 in tropical home office; Shoemaker protocol (tried September 2023 for 3-4 months without recalled benefit), possible genetic predisposition (siblings with milder neuropathy), and infectious triggers (EBV 2010, COVID 2023). The patient suspects an underlying autoimmune process with a genetic component and unknown trigger, and fears an ALS-like progression affecting vital functions. He remains actively seeking effective treatment amidst diagnostic uncertainty.
That’s a lot of information already! Read on for more details, and check out his Comprehensive Test Results Spreadsheet for the full biomarker list. Please feel free to email us at medicalsolutionbounty@gmail.com if you have any questions!
5. Background
Medical History
Neurological/Neuromuscular:
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) - Dx ~2019 (now questioned)
Elevated Creatine Kinase (CK) - Persistently elevated (400-900 range) for >15 years
Spinal Stenosis - Cervical and Lumbar regions (s/p surgeries)
Mild Cognitive Impairment - Noted 2024, subjectively worsening
Orthostatic Intolerance - Dizziness/tachycardia upon standing (long-standing)
Restless Leg Syndrome (Improved with Vyvgart)
Hematologic/Oncologic:
Monoclonal Gammopathy of Uncertain Significance (MGUS) - IgG-kappa (Dx 2007, stable)
Pulmonary Embolism (Bilateral) & DVT (Left leg) - June 2024
Vitamin B12 Deficiency Anemia - Due to selective malabsorption with protein
Autoimmune/Endocrine:
Hashimoto's Thyroiditis/Hypothyroidism - Dx 2010 post-EBV
Autoimmune Thyroid Disease - Dx confirmed 2023
Cardiovascular:
Atrial Flutter - Dx ~2005 (s/p ablation 2015)
Hypertension
Gastrointestinal:
GERD - Dx 2020
Elevated Liver Enzymes - Mild transaminitis (AST>ALT) noted 2022
Giardiasis (Lambliasis) - Treated 2024
Infectious Disease History (See below)
Ophthalmologic: Cataracts (Dx 2020)
Environmental: Contact/exposure to toxic mold (confirmed in two residences)
Pulmonary: Pneumonia (Left lower lobe) - July 2024
Surgical History
Left Shoulder Replacement - 1994
Bilateral Knee Arthroscopy - 1995, 1996
Right Shoulder Arthroplasty/Tendon repair - 2005
Lumbar Laminectomy & Laser Treatment - 2005-2006
Revision Lumbar Spine Surgery (L5-S1) - 2007
Left Total Hip Replacement (Osteoarthritis/Osteonecrosis) - July 2014
Cardiac Catheter Ablation (Atrial Flutter/SVT) - 2015
Cervical Spine Surgery (Posterior Laminoplasty C4-6; Laminectomy C3, C7) - Nov 22, 2023
Lumbar Spine Surgery (L4-S1 PSIF and TLIF) - Mar 8, 2024
Left Quadriceps Muscle Biopsy - Aug 1, 2024
Fat Pad Biopsy (for Amyloid) - Aug 5, 2024
Family History
Mother: Deceased ~95 (Stroke, bradycardia/pacemaker, breast cancer, thyroid disease, alcohol abuse, anxiety)
Father: Deceased ~75 (Peripheral neuropathy, kidney cancer [cause of death], arthritis, anxiety)
Sibling: ~75 yo (Arthritis, atrial fibrillation, peripheral neuropathy)
Sibling: ~70 yo (Arthritis, peripheral neuropathy)
Note: Peripheral neuropathy in father and both siblings raises suspicion for a genetic component.
Social History
Occupation: Continues working in business.
Marital Status: Married.
Residence: Splits time between northeastern metropolitan area and coastal tropical island.
Housing History: Significant mold discovered in primary residence office (2020) and tropical residence office (Fall 2023). Relocated to tropics (2022) for quality of life.
Tobacco: Former smoker (quit mid-1980s after ~20 years, 1 pack/day).
Alcohol: Minimal (3-4 glasses of wine per week).
Exercise: Previously very active (weights, cycling). Currently maintains modified routine (lighter weights, flat terrain biking) daily despite fatigue; intensity reduced around late March 2025 (coinciding with HBOT start).
Diet: Generally low-carb. Avoids dairy, nightshades, gluten. Typical intake: Breakfast (eggs/fruit/peanut butter), lunch (soup), dinner (protein/vegetables), snacks (rice crackers/peanut butter). 2 cups coffee/day. Minimal soda.
Sleep: Uses CPAP. Props self up due to GERD. Fatigue pattern shifted (better energy in AM) since mid-April 2025.
Stressors: Significant past financial/business stressors (2010). Ongoing stress related to progressive illness and diagnostic uncertainty.
Ethnicity: Ashkenazi Jewish descent.
Allergies
Fish Products: Anaphylaxis (Onset May 2019)
Oxycodone: Nausea, GI upset (Nov 2023)
No other known drug allergies.
6. Medications & Treatments
Medications
Prednisone pulse – 15 mg ×4 (Day 1) → 10 mg ×4 (Day 2) → 5 mg ×4 (Day 3)
Trial in April 2025 for short-term immunosuppression / inflammation controlArmour Thyroid 90 mg – with breakfast
Support thyroid functionLosartan 50 mg – with breakfast
Blood-pressure & vascular supportBupropion HCl 100 mg – with breakfast
Mood / cognitive boostValacyclovir 500 mg – as needed, breakfast
Antiviral suppressionVyvanse 50 mg – as needed, breakfast
Combat fatigue / daytime alertnessTramadol HCl 50 mg – as needed, breakfast
Pain controlRiluzole 50 mg – twice daily (breakfast & dinner) for 30 days
Glutamate inhibition / neuro-protectionEliquis 5 mg – twice daily (breakfast & dinner)
AnticoagulationGabapentin 300 mg – at bedtime
Neuropathic pain reliefTrazodone 50 mg – at bedtime
Sleep qualityDuloxetine 60 mg – at bedtime
Neuropathic pain & mood supportTestosterone 60 mg – upon waking
Counter muscle wasting / support energy
Supplements & Nutraceuticals
(With breakfast unless noted)Super Enzymes (NOW) – 1 cap per meal
B-Complex Plus (Pure Encapsulations) – 1 cap
Oxaloacetate CFS (Terra Biological) – 2 caps
Fish Oil 2,400 mg (Nature’s Bounty) – 2 caps
Animal Creatine (AnimalPak) – 4 chews
Intestinal Movement Formula (HealthForce) – 3 caps
Complete Gut Health (Beekeeper’s) – 2 caps
OptiMag Neuro (Xymogen) – 3 caps with lunch
DHEA 25 mg (Xymogen) – 1 cap with lunch
ProbioMax Daily DF (Xymogen) – 1 cap with lunch
K2-D3 5000 (Xymogen) – 1 cap with lunch
CoQmax Ubiquinol (Xymogen) – 2 caps with lunch
Xcellent C (Xymogen) – 2 caps with lunch
ActivNutrients w/o Iron (Xymogen) – 2 caps with lunch
Electrolytes – LMNT or Vitassium FastChews daily & with exercise
PRN OTCs – Tums, Pepto-Bismol, Tylenol, Gaviscon, Claritin/Zyrtec/Allegra as needed for digestive or allergy relief
Injections
(Wednesday & Friday unless noted – administered by nurse)Vyvgart Hytrulo 5.6 mL IM – weekly (Fri)
Reduces RLS & paresthesiaPEG-MOTS-c FG 5 mg SC
PEG-SS-31 FG 5 mg SC
LYO MSC Exosomes 2.75 billion IV
Vitamin B₁₂ 50 mg IV
Glutathione 2,000 mg IV
Thiamine HCl 100 mg IV
Leucovorin Calcium 10 mg IV
Phosphatidylcholine 1,000 mg IV
DSIP peptide 15 IU SC
(Epinephrine autoinjector on hand for anaphylaxis.)
Significant Discontinued Treatments
IVIG: 40g -> 60g, 2x q3 weeks (Aug 2019 - Aug 2024; stopped due to lack of benefit)
Adipose Allogenic Stem Cells: 4 treatments (Fall 2024; no benefit noted).
Young Plasma: 2 treatments (Fall 2024; no benefit noted)
Plasmapheresis: 2 treatments (Fall 2024; no benefit noted)
NAD+ infusions: Didn’t tolerate
Shoemaker Protocol (Mold Treatment): Started Sept 2023, duration ~3-4 months (Stopped, patient recalls no significant benefit)
Tirzepatide: 2.5mg weekly (Stopped Apr 4, 2025)
Mestinon: Stopped Apr 4, 2025
Clonazepam: Microdose (Paused)
7. Review of Systems
General: Fatigue significantly improved since mid-April 2025 (improvement noted within 2-3 weeks of starting HBOT on 3/27/25), increased energy, improved AMs.
Neurological: Progressive weakness, atrophy (L>R, especially calf), sensory loss/paresthesias (feet/legs), worsening balance/gait, bilateral arm elevation limit (<30 deg), worsening cognition (memory/confusion), long-standing orthostatic intolerance (See HPI). Cold sensitivity (achy/tingly). Muscle cramps (requires Mg). Occasional twitching. RLS improved. Morning stiffness.
Cardiovascular: History of AFlutter s/p ablation. History of PE/DVT, on Eliquis. Long-standing orthostatic tachycardia. No current chest pain, palpitations.
Respiratory: History of PE (June 2024), History of Pneumonia (July 2024). Resolving cough post-PE. No current shortness of breath at rest.
Gastrointestinal: GERD (requires propping for sleep). Daily bloating/gas (improved recently on different antacid/supplements). Avoids dairy, nightshades, gluten. Daily bowel movement. History of Giardiasis.
Musculoskeletal: Progressive muscle wasting/weakness (See HPI/Neuro). Scapular winging (R>L). Difficulty with fine motor control. Joint pain improved. History of OA/ON. Achy/tingly pain worse in cold.
Skin: Slow wound healing on legs. Dry skin on toes. Calcification noted on scalp. No active rashes.
Endocrine: Hypothyroidism/Hashimoto's (stable on Armour Thyroid). No diabetes.
Hematologic: Stable MGUS (IgG-kappa). History of PE/DVT. Mild lymphopenia noted on some labs.
Immunologic: Hashimoto's. History of CIDP diagnosis (questioned). High ANA titer.
8. Assessment
This is a mid-70s male with a profoundly debilitating, progressive neuromuscular disorder of unknown etiology, characterized by asymmetric weakness and atrophy (L>R, distal > proximal), sensory neuropathy, worsening balance, recent cognitive decline, and historically severe fatigue. His primary issues currently are the unrelenting muscle deterioration and the very recently improved (since mid-April 2025), yet still significant, fatigue. Despite exhaustive multispecialty evaluations and numerous therapeutic trials, a definitive diagnosis remains elusive.
Key Features & Contributing Factors:
Progressive Neuromuscular Decline: Worsening weakness, atrophy, balance issues despite interventions. Unchanged muscle status despite recent fatigue improvement.
Multifactorial Etiology Likely:
Genetic Susceptibility: Strong family history of neuropathy (Father, both siblings). Ashkenazi Jewish descent. Rule-out of common hereditary neuropathies via panel/WGS, but rare/novel variants or complex inheritance possible.
Environmental Triggers: Significant, confirmed toxic mold exposure in two homes ("horrible"). Elevated mycotoxins and heavy metals (Antimony, Tungsten) on testing. Shoemaker protocol ineffective per patient recall.
Infectious Triggers: Temporal association of onset/worsening with EBV (2010) and COVID-19 (2023). Serologic evidence of past/chronic infections (Coxsackie B, HSV1, EBV). History of Giardiasis, Pneumonia.
Autoimmune/Inflammatory Component: History of Hashimoto's. Initial CIDP diagnosis (now doubted). High ANA titer. MGUS (IgG-kappa). Elevated inflammatory markers (C4a, TGF-B1, MMP9). Lack of definitive response to IVIG, PLEX, Prednisone challenges simple autoimmune mechanism.
Metabolic/Mitochondrial Dysfunction: Suspected given fatigue, elevated CK, multi-system involvement, but not definitively proven. Some treatments target mitochondrial support (Peptides, NAD+).
Spinal Stenosis: Severe cervical/lumbar stenosis present, but lack of improvement post-surgeries suggests it was not the primary driver of neurological decline.
Diagnostic Uncertainty: Extensive workup has ruled out several conditions (Amyloidosis via biopsies, common genetic neuropathies, likely IBM/Polymyositis based on biopsy, POEMS unlikely given specifics). CIDP diagnosis remains questionable due to progression and limited IVIG response. ALS is a concern for the patient given progression, but EMG/clinical features may not be typical.
Treatment Response: Limited benefit from most interventions. IVIG ineffective long-term. Spine surgeries ineffective. Alternative therapies (Stem cells, Plasma, PLEX) ineffective. Vyvgart provides mild RLS/sensory relief only. Fatigue improved noticeably starting mid-April 2025 (within weeks of starting HBOT 3/27/25 & reducing exercise), but impact on underlying disease is unclear and muscle status remains unchanged. Short Prednisone pulse (early April 2025) gave temporary boost. Upcoming Riluzole trial is speculative.
Overall: This gentleman suffers from a complex, progressive condition likely resulting from an interplay of genetic predisposition, environmental triggers (mold), infectious insults, and potentially dysregulated immune/inflammatory responses. The primary pathology (axonal, demyelinating, myopathic, or combined) remains unclear. Current management is largely supportive and experimental, focused on symptom control and exploring therapies targeting potential underlying mechanisms (inflammation, mitochondrial support, detoxification) while awaiting diagnostic clarity. Prognosis is uncertain given the relentless progression and lack of effective disease-modifying therapy to date.
Detailed Timeline of Medical Events
1980s-1990s
1980: Quit smoking (per record from Feb 23, 2022)
1994: Left shoulder joint replacement
1995-1996: Bilateral knee arthroscopy
Late 1990s/Early 2000s: Started experiencing muscle cramps at night and restless legs (mentioned in Aug 27, 2024 record)
2000s
2003: Diagnosed with nontoxic thyroid nodule (Dec 15, 2003)
2005: Right shoulder arthroplasty/tendon repair
2005-2006: Atrial flutter diagnosed
2005-2006: Lumbar laminectomy and laser treatment
2007: Revision of L5-S1 spinal surgery
2007: Diagnosed with IgG-kappa MGUS after presenting with mild sensory peripheral neuropathy of bilateral lower extremities
2010-2015
2010: Significant life stressors: stock market crash, business partnership dissolution, business folded
2010: Contracted EBV with severe sore throat, URI, extreme exhaustion
2010: Diagnosed with Hypothyroidism/Hashimoto's disease following EBV infection
2010: Developed initial neuropathy symptoms with tingling in feet
2010: Developed chronic fatigue following these combined stressors and infections
2014 (July): Left total hip replacement due to osteoarthritis and osteonecrosis
2015: Cardiac catheter ablation for Atrial Flutter/SVT
2017-2019
2018: Began noticing frequent tripping while walking across the lawn; balance issues worsen
2018 (Dec 13): Lab tests showing elevated KAPPA (2.68) and K/L Ratio (2.79)
Early 2019: Diagnosed with CIDP by first neurologist
Mid-2019: CIDP diagnosis confirmed by two additional neurologists
July 2019: GeneDx Hereditary Neuropathy Panel - Negative
August 2019: Started IVIG treatment (40g per treatment, 2 treatments every 3 weeks)
2020-2022
2020: Diagnosed with GERD and cataracts
2020: Northeastern home office discovered to have significant mold exposure
2020-2022: Continued IVIG treatments with dosage gradually increasing from 40g to 60g as symptoms worsened
2022: Moved to tropical island residence
2022 (Feb -April): Gastroenterology visits for elevated liver tests
2022 (April 26): Emergency Department visit for abdominal pain
2023
2023 (Feb/Mar): Contracted COVID-19 (treated with Paxlovid, rebound symptoms)
2023 (May 22): ED visit for right thumb injury (dropped weight)
2023 (May 24-27): Inpatient for thumb cellulitis/abscess
2023 (Late May): Experienced significant worsening of leg weakness following COVID
2023 (Summer): Condition continued to deteriorate
2023 (Aug): Neurologists revised diagnosis, no longer confident in CIDP; referred for spine surgery consult based on MRI findings
2023 (Oct 17): EMG/NCS: Severe generalized sensorimotor polyneuropathy (demyelinating/axonal features), possible L lumbar radiculopathy
2023 (Oct 19): Autoimmune Thyroid Disease diagnosis confirmed
2023 (Fall): Significant mold discovered in tropical home office. Started Shoemaker protocol (~Sept 2023 for ~3-4 months); patient recalls no significant benefit and discontinued.
2023 (Nov 22-23): Hospital stay for Cervical Spine Surgery (Posterior Laminoplasty C4-6; Laminectomy C3,7) - no neurological improvement.
2024 (January-June)
2024 (Jan-Feb): Office visits for persistent numbness, weakness, unsteady gait
2024 (Feb 12): Spinal Stenosis Lumbosacral Region diagnosis formalized
2024 (Mar 8-11): Hospital stay for Lumbar Spine Surgery (L4-S1 PSIF and TLIF) - no neurological improvement.
2024 (Spring): Continued deterioration despite surgeries
2024 (June): Sudden loss of ability to raise right arm while on cruise (persists, now bilateral limitation)
2024 (June 21-23): Hospitalized for extensive bilateral PE and L DVT following return travel
2024 (June-August)
2024 (Summer): Extensive multidisciplinary testing without definitive diagnosis
2024 (July 9): ED visit for cough
2024 (July 19): ED visit for SOB/cough, diagnosed with LLL pneumonia
2024 (Aug 1): Left quadriceps muscle biopsy (neurogenic atrophy, no inflammation/amyloid)
2024 (Aug 5): Fat pad biopsy (negative for amyloid)
2024 (Aug): Discontinued IVIG due to lack of benefit
2024 (September-November)
2024 (Fall): Trialed adipose stem cells (x4), young plasma (x2), plasmapheresis (x2) - no benefit noted.
2024 (Sept 3): Thrombophilia testing negative
2024 (Sept 5): Whole Genome Sequencing - Negative / No genetic etiology identified
2024 (Sept 19): Normal Neurofilament light chain, Negative TTR gene test
2024 (Throughout): Continued muscle wasting (esp L calf/quads), fatigue progression, exercise limits
2024 (Nov 24): ED visit for R Baker's cyst
2025
2025 (Feb): Started Vyvgart (efgartigimod) weekly injections. Reports RLS/paresthesia benefit but no change in weakness/balance.
2025 (Mar 27): Initiated home HBOT therapy; reduced exercise intensity around same time.
2025 (Early Apr): Completed 3-day Prednisone pulse trial (temporary benefit). Discontinued Tirzepatide, Mestinon (Apr 4). Started Riluzole trial.
2025 (Mid-Apr onwards): Noted significant improvement in fatigue, alertness, and AM energy (within 2-3 weeks of starting HBOT). However, muscle strength/atrophy remain unchanged. Cognitive function worsening. Using CPAP. Long-standing orthostatic symptoms persist.
2025 (Near Future): Continuing current regimen including HBOT. Starting neurofeedback for brain fog. Ongoing search for diagnosis/treatment.
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