Marek Andrzej
New Member
Hi everyone,
I am reaching out on behalf of my brother Christof (45, based in Germany). We are desperately looking for insights, experiences, or recommendations regarding his severe condition.
Background & Baseline:
Diagnoses: Known Mitochondrial Dysfunction & Very Severe ME/CFS (completely bedridden, isolated in total darkness and silence, non-transportable).
Trigger/Crash: A dental surgery (cavitation/NICO) 4 months ago triggered a massive, severe neurological and physical crash.
Current Main Issues & Findings:
Neuroinflammation & Trigeminal Irritation: Chronic jaw pain, dysesthesia, extreme sensory overload, and prominent visual phenomena / pseudohallucinations (which reactivated heavily a few weeks ago).
VZV Reactivation: Very high Varicella-Zoster IgG (1960 mIU /ml) with borderline positive IgM (0.5 Index), suggesting a potential VZV reactivation (Zoster sine herpete) as a major trigger.
Autonomic Instability: Smallest stimuli trigger severe autonomic crashes and multi-hour Dorsal Vagal Freeze states (with laryngeal constriction / functional aphasia).
Lorazepam Tapering: Currently undergoing micro-tapering of Lorazepam (at ~ 0.16 mg/day).
Other Labs: Elevated TSH (5.45 \muIU /ml, on 62.5 \mug L-Thyroxine), slightly low Magnesium (0.73 mmol/l).
Current Medications: Pregabalin (225 mg), Memantine (15 mg), Ivabradine (2 x 2.5 mg), Promethazine (3-4 drops evening), L-Thyroxine (62.5 \mug), Lorazepam (~ 0.16 mg micro-tapering), Macrogol.
Our Questions to the Community:
Has anyone experienced VZV reactivation / antiviral treatment (e.g., Valacyclovir, Famciclovir) in very severe ME/CFS or patients with an extremely low threshold for medication side effects?
Has anyone encountered visual phenomena / pseudohallucinations linked to neuroinflammation, sensory deprivation (darkness), or benzo tapering?
Any general advice or protocols on easing dorsal vagal freeze states or severe neuroinflammation under these circumstances?
We are deeply grateful for any thoughts, experiences, or insights you can share!
Thank you so much,
Marek Andrzej
I am reaching out on behalf of my brother Christof (45, based in Germany). We are desperately looking for insights, experiences, or recommendations regarding his severe condition.
Background & Baseline:
Diagnoses: Known Mitochondrial Dysfunction & Very Severe ME/CFS (completely bedridden, isolated in total darkness and silence, non-transportable).
Trigger/Crash: A dental surgery (cavitation/NICO) 4 months ago triggered a massive, severe neurological and physical crash.
Current Main Issues & Findings:
Neuroinflammation & Trigeminal Irritation: Chronic jaw pain, dysesthesia, extreme sensory overload, and prominent visual phenomena / pseudohallucinations (which reactivated heavily a few weeks ago).
VZV Reactivation: Very high Varicella-Zoster IgG (1960 mIU /ml) with borderline positive IgM (0.5 Index), suggesting a potential VZV reactivation (Zoster sine herpete) as a major trigger.
Autonomic Instability: Smallest stimuli trigger severe autonomic crashes and multi-hour Dorsal Vagal Freeze states (with laryngeal constriction / functional aphasia).
Lorazepam Tapering: Currently undergoing micro-tapering of Lorazepam (at ~ 0.16 mg/day).
Other Labs: Elevated TSH (5.45 \muIU /ml, on 62.5 \mug L-Thyroxine), slightly low Magnesium (0.73 mmol/l).
Current Medications: Pregabalin (225 mg), Memantine (15 mg), Ivabradine (2 x 2.5 mg), Promethazine (3-4 drops evening), L-Thyroxine (62.5 \mug), Lorazepam (~ 0.16 mg micro-tapering), Macrogol.
Our Questions to the Community:
Has anyone experienced VZV reactivation / antiviral treatment (e.g., Valacyclovir, Famciclovir) in very severe ME/CFS or patients with an extremely low threshold for medication side effects?
Has anyone encountered visual phenomena / pseudohallucinations linked to neuroinflammation, sensory deprivation (darkness), or benzo tapering?
Any general advice or protocols on easing dorsal vagal freeze states or severe neuroinflammation under these circumstances?
We are deeply grateful for any thoughts, experiences, or insights you can share!
Thank you so much,
Marek Andrzej
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
