Very Severe ME/CFS after Cavitation/NICO Surgery: VZV Reactivation, Freeze States & Tavor/Benzo Tapering

M

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
 
Welcome, Marek. It doesn’t feel right to like the post, but I want to say how sorry I am about your brother’s dire health situation.

I’m not aware of much literature on the topic, but the people at Røysumtunet in Norway have some experience with the most severely affected so reaching out to them has a slight chance of being worthwhile.

We have a thread on a recent paper by them, you can find it here: link
 
Welcome @Marek Andrzej, have you noticed our fact sheets, we hope to develop more in the future and are currently working on the German translations.

We have a number of German members who might be able to comment on any specialist service provision in particular areas, though in most countries people with ME/CFS are not served well and too many services are recommending inappropriate or even harmful interventions.
 
Marek Andrzej said:
Has anyone encountered visual phenomena / pseudohallucinations linked to neuroinflammation, sensory deprivation (darkness), or benzo tapering?
Click to expand...
A few flashes of light, with my eyes closed, in the dark (it was bright enough to make me jump and wonder who was waving a torch around the room)
In another time I had also trigeminal neuralgia for about three weeks.

But I couldn’t say with what it was linked, apart that I was in a severe crash.

I’m so sorry to hear about the situation you’re going through.
Have you been able to rule out a residual bacterial infection following the cavitation?
 
Marek Andrzej said:
Any general advice or protocols on easing dorsal vagal freeze states or severe neuroinflammation under these circumstances?
Click to expand...
Hi, @Marek Andrzej,

As other shave said, we try not to give advice on medical matters. None of us here are physicians experienced in ME/CFS, although I am one of a small number of physician members.

The only thing I would say is that neuroinflammation is not a feature of ME/CFS as far as we know. I wonder how this diagnosis was made? One possible option is to ask for a different physician opinion locally. Visual aberrations do seem to occur in people with very severe ME/CFS but they can also be features of other problems.

The only other point I would make is that viral antibody titres are probably not of much use in making clinical diagnoses in this context.
 
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