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

[Marek Andrzej]

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

 

[Blog Reader]

I'm so sorry to hear that you're going through this.

I don't have viral reactivation, nor have I taken benzos or had these visual effects. However, I have a very low threshold for medication side effects, and I have been very sensitive to light in the past (e.g., not being able to handle having the curtain slightly cracked).

What has helped me with light sensitivity this year (although I'm not sure whether this applies to your brother's situation): Realizing that I really needed certain micronutrients. (I think my medications--omeprazole and others--had blocked some of them.) I started magnesium glycinate and zinc citrate, and they helped greatly. (Note: My electrolytes seemed to become very unstable when I did this, so please be careful if you try it. I told others that I thought it was like what I'd read about refeeding syndrome--strong, quick-onset cramps and twitches and such within an hour or two of taking the new mineral; symptoms could be relieved only with electrolyes and would bother me maybe for weeks. I kept coconut water, magnesium glycinate capsules, sodium, and calcium supplements all available for when I needed them, and it was very hard for a little while. So I don't know whether it's safe for everyone.) I had to take only 3.75 mg of zinc most days, because my electrolyes were just too unstable if I took more. So it took time.

After a while of getting those two important nutrients, I started needing other vitamins and minerals. My theory is that once I got magnesium and zinc, my body had a bigger need for all the other nutrients that are required for life and energy (e.g., copper, vitamin D, iron, choline, B vitamins; the latest is molybdenum). I added them mostly one at a time (except the B vitamins), to go slowly and carefully watch the effects. You can read some of how I did it in my "Magnesium and Zinc?" thread on these forums. With each change, I have to be ready for electrolyte problems again--so I must have plentiful sources of calcium, potassium, magnesium, and sodium available at all times.

I tried to use very small doses until I knew how I would react and was sure it was safe. Like buying gummy vitamins and cutting them if I had to, or taking a little powder poured out of a capsule. Except with magnesium, calcium, or potassium--I use much more of those.

Of course, please be careful if you try to do anything similar, and always check with a doctor. I'm not a medical professional. This is only my personal experience; I can't give medical advice. And my CFS has been only severe, not very severe (I could still get up long enough to grab a cup of peanut butter that I had in the room)--so I'm not sure whether electrolyte problems might be even stronger for you all and whether the doses I took might be too big at first. The electrolytes were very difficult to keep up and sometimes made me wonder whether I would end up in the hospital (like from low potassium)--but, thankfully, I have not so far.

At this point, I can tolerate some light for a while. Still not like most people, but at least much more than seven months ago.

Wishing you the best. I will pray for you and your brother tonight.

 

[Blog Reader]

And when my brain is inflamed, the best I know to do (besides trying to figure out if I'm lacking a vitamin) is to let it rest. I've had to tell friends and family that I can't talk to them when my brain is burning. It sounds as though you are already doing that.

One possible resource is the ME/CFS Crash Survival Guide at this link: https://batemanhornecenter.org/education/mecfs-guidebook/

You can print it out in black and white if that's less stimulating. It has communication cards at the end and various tips for getting through the worst times.

 

[Rockt]

Benzo tapering is TERRIBLE! It took me 15 months to get off a low dose of Clonazepam and every day was bad. Really bad. It has to be done with very small reductions. I don't know how much .16mg of Lorazepam is in terms of his regular dose but it could be too much. And reducing it every day is definitely too much. Those gaba receptors will be screaming for more. Honestly, it was so long ago (approx. 12 years, I think) that I don't remember much of the protocol. A gentleman who went by Freddd, either on this forum or Phoenix Rising helped me with a protocol he designed. It involved reducing the dose fractionally and also increasing the time it was taken (ie. if taken every 24 hours, it became 24 hrs + 15 minutes and so on but again, I apologize, I don't recall how often this was done).