2023-10-10 Tuesday - recovery?: Apparently adapted better now, but my wife says I look dreadful (white-yellow face with black eye rims). RR/supp changes?: Seems OK-ish. VLDN?: Seems to be OK no further improvement aside from sleep, but shouldn’t be impatient, some people say it takes months till it works well, so I really can’t complain if it worked immediately altho there’s still such a wide spectrum of dosage possibilities…
What … worked / went wrong … today:
Habit encouragement… : (I’m doing it all, but still need this prompt)
Time (= stress) management: Blog earlier 
, forums less , jump off hamster wheels
Self-treatments: Jaw , wall sits , balancing , supps by 15:00: 5-fold bulk at 20:00 in 20’ , back by 16:00: , capsules by 17:00 
, but 21:00 a whole tub of threonate
How was I today?: Feeling 80-85%-ish (), energy today (, relatively), sleep Monday night , sleep Tuesday night .
Today working mainly on … time management , better self-treatments , RR , energy, esp. via VLDN , also now dry mouth, starting with brushing teeth more often, but a short mouth wash with salt water seems to be helping, see research
VLDN
Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th-10th 10:00 0.125mg.
VLDN 
for:
- Energy up from 10% to 18%: for activities - , walking: up from 5’ to 30’ - , listening: up from 3’ to 15’ - , stiffness - after postures still for 30’', but not all the time, like stairs etc., in the evening still shuffling around the flat, but quickly. Shorter recovery times - , all constantly . But
: still yellow/white face and black eye rims. As my wife is saying this more often it sounds as if it’s getting worse, but I can’t always see it myself (but sometimes I am startled by the black rims). - Pain: overall Ache - better now toning down, but definite limit, local: lower back - definitely, less - definitely, hangover - nope.
- Muscles: eyes = vision () - not really, bladder: pee frequency & urge () - hmm, today not necessarily.
- Sleep: feel better in breaks, waking up better, more awake -
VLDN
Nothing any more, only as ever needing to “curb my enthusiasm”.
How to continue: Increased dose, but avoiding strain by only using half the extra energy I have - yup. Mornings better? - maybe.
RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), around 4h/wk. Night dip usually 30%, sometimes phases of 10%, now focusing on implementing research for more reliable measurement and assessment, then trying to actively decrease.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 4:0 and 2:0 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 60%/4-5 ❌. White lips80% (❌). Exhaustibility "82%" ✅ and sleep ✅, click for details:
EXHAUSTIBILITY today: “82%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest"), 2h very slow, 6h slow, 1h30 medium, 30' quick
SLEEP (click for details): 8h01, up 5x (76'), not all deep, partly NSDR, but didn't hear much of it, not sure how much or why I had so many thoughts that I had to write down - too many stimuli I spose, not "restorative" and "awake", but not then tired once I've managed to get awake. ✅/❌, dry mouth better after washing mouth out with salt water, everything else OK ✅, 70%/2 (✅),➔ getting up: 70%/2 (✅).
Sleep 22:10-
23:35 7’
0:55 32’ (blog reasons to be cheerful…)
1:55 12’ (blog) 2:19 5’ (blog → NSDR… till… starts again)
3:20 20’ 6
6:00!
-7:27 Sum: 1h50+7h27-(7+32+12+5+20=)76’ = 9h17-1h16 =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Phone calls and cancelling my work for church - both good in the end, but stressful to do. Trying not to get as emotionally involved as my neighbour and esp. my wife in the recent news, incl. the Hamas attack. One insect bite on upper inner left thigh from 2 days ago is now swollen and getting more annoying, praps increasing sleep problems tonight as well as racing thoughts, despite being tired. NSDR necessary. Click for list, incl. Sept summary added Oct 2nd...."
(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being. Oct 1st starting LDN…
3) DOCS: Oct 11th: GP2's office called back they're getting all 3 things sorted: If the onco-office doesn't phone back inside of 2 weeks I should tell them, the cardio bloods are OK can be done like that again, GI still needs to be contacted. Last update Oct 10th: Reminded 2nd GP office about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.
4) UNDER CONTROL ✅ (attention necessary (✅)) - successfully researched dry mouth home remedies, as it seems up from 30 to 40% at the moment, but salt water rinse seems OK for a start. A bit more pee pain yesterday and partly today will have been from forgetting to prepare GABA half-capsules cos of my new system of preparing, made sure this evening and better tonight:
1) GI, pee, local pains, weather, dry mouth well under control: Details...
except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().
2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd.
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept.
Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
‘Research’ today: Dry mouth treatments I don’t seem to have tried yet:
Brush teeth regularly so mouth is clean. https://www.youtube.com/shorts/SV4QqYAQ9Rw and is regularly said. But starting to do so, the brushing itself doesn’t help short term at all.
Avoid mouth washes with alcohol, cos alcohol is drying - so my calendula essence is a problem if I use it more often (for virus protection and sore throat). https://youtu.be/1q4Ou9UEJDo?t=326, https://youtu.be/lP0P-zduVcQ?t=132
Remember dry mouth is bad for teeth (https://youtu.be/lP0P-zduVcQ)
And now comes the real stuff:
https://youtu.be/xNB7fEgEkG4?t=78 Yoga Institute Dr. Hansaji Yogendra
“metallic taste which leads to tastelessness”: Yes, thanks for that very understanding description!
- Fennel is the only “spice” one she mentions that I tolerate, but I eat it a lot already.
- Aloe vera juice: Stopped that, could try again.
- gargling with salt water: Try, but doesn’t it cause dry lips? Tried it at 12:50… feels good actually , but my stomach gurgling at 13:10 suggests/reminds me that anything that stimulates saliva will also stimulate my stomach acid . 14:00 no stomach problem, mouth moist. Not gargling, just swishing a few seconds.
- water with baking soda 1/4 tsp and 1/8 tsp salt few seconds every 3h: Try.
- sesame or coconut oil 15-20’ = gandush / oil pulling: Try.
- yoga: filling mouth with water tightly: Try.
- clean tongue, root of tongue: try again.
- neck stretches for salivary glands: I do that anyway.
Not for me - Drink warm water or hot garlic water and other spices.
Quality of life: 85%
Lessons in self-care: Continuing bit by bit.
Reasons to be cheerful:
a) Delightful in theory and significance, but very sad too: I picked up some dark stick thing in the cellar and it was soft so I let it fall again, then saw things sticking out from it, and looking close saw it was a small lizard, smaller than a little/pinky finger, with a completely bright orange belly it’s an Alpine newt (100% I’ve decided). Sad cos I may have killed it, happy cos it means there are reptiles in my garden, and all the stones and things have been worth it. I hope it wasn’t the only one! On the close ups I can see how lovely he was. I was trying to show my wife, but she was very sensitive cos of the Hamas attack etc., and I didn’t realize that on the close up you could see the head damage. 
.
b) A sparrowhawk or similar bird of prey (couldn’t see the tail length, just the wing spread) with carrion crow as entourage directly skimming above our garden again. I read recently that some birds have a warning call different for airborne to ground predators. But a sparrowhawk is so fast there’s no possibility for defence. In my ornithologist’s book he describes seeing a female sparrowhawk and a magpie struggle for 2 hours before the magpie died, a similar video is on youtube, but the sparrowhawk was so exhausted after that she also died. There’s no way I’ll be telling my wife this story at the moment, cos we still miss our magpie of last winter, maybe they’ll be a time. But for me it shows how complicated nature is.
c) The confused magpie is around fairly often, still wondering whether s/he’ll be our winter guest.
d) In next door’s garden we saw a pigeon feeding two fledglings, maybe from the nest next door to the other side, cos I’d seen and recorded there were two squabbling a week or 2 ago. Last babies of the year I guess. See how they go. Best put out food more regularly for them.
Simplified: 5-fold bulk preparation of supps for 5 days in the evening only took 20’, whilst for 1 days can take 8’. It can still be perfected e.g. using my mates boxes, which I have to clean first tho.
Foggies: -
Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting
Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023