2023-10-14 Saturday - recovery?: Still stable. RR/supp changes?: OK I think. VLDN?: Still 0.125, doubling Monday, still OK.
What … worked / went wrong … today:
Getting up was OK, altho late, garden stuff fun, tongue burning in the afternoon will be from histamine from hard cheese building up.
Habit encouragement… :
Time (= stress) management: Blog earlier 
, forums less , jump off hamster wheels .
Self-treatments: Jaw - much less tender now I’ve been pressing the hurting spots for 2’/d - hard to find spots that still hurt a little so I think I’ll just go for ‘on demand’ with ‘zero tolerance’, wall sits , balancing 
, supps by 15:00: - bulk, back by 16:00: , later I think? , capsules by 17:00 , it’d be time.
How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Friday night (), sleep Saturday night .
Today working mainly on … time management / (allowing it), better self-treatments / (but OK), RR: hardly (), energy, esp. via VLDN .
VLDN
Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th-14th 10:00 0.125mg.
VLDN 
for:
- Energy up from 10% to 18%: for activities - only pretty slow energy, walking: up from 5’ to 30’ - probably OK, listening (people + music): up from 3’ to 15’ - “possible”, but still difficult, Ache then goes up to 5 , stiffness - , shorter recovery times - , all constantly . But
: still yellow/white face and black eye rims. - Pain: overall Ache - more from strain like filming or talking to people rather than moving, local: lower back - fine, less - fine, hangover - fine.
- Muscles: eyes = vision () - better again usually, bladder: pee frequency & urge () - still a bit annoying.
- Sleep: feel better in breaks, waking up better, more awake - yup.
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 - . Mornings better? -.
RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? ❌ actively trying to 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 :0 (moving 30%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 60%/4-5 ❌. White lips80% (❌). Exhaustibility "82%" ✅ and sleep ✅ - 8h20, up 4x (65'), 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): 8h20, up 4x (65'), all deep, better tonight, cos I felt much more pleasantly tired than the night before, stress is lessening. ✅/❌, hardly nostrils, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.
Sleep 22:35-
23:22 5’
0:35 25’ hp salt water 2xp0
2:15 15’ hp 10’
3:29 20’ 6
5:40 4’
-7:50 nostril/s0-10% dryhands0% nausea0% stomach0-10% sinuses0% headache0% stools0 loose% zombie0%. plugs0 cream0 gel0 wet0 heat teeth0
Sum: 1h25+7h50-(5+25+15+20=)65’ = 9h15-65’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Bite itch has calmed down at last. Burnt tongue and one salivary gland on the right hurting after eating too much cheese. Excitement (= stress) ✅: Hardly. 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: Last update Oct 11th: GP#2's office checked back 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 (✅)) - swishing with salt water now helps dry mouth ✅, pee urge still annoying, but no local pains:
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
Quality of life: 85%.
Lessons in self-care:
Still toned down, moving slowly quite a bit, getting things done for my wife as well as myself.
Reasons to be cheerful:
a) Plant life:
aa) Checking old plant identifying mysteries in my photos before too much changes in the winter, I realized I am getting quite a bit closer to the 100%, but there are still some I re. the tool has to give up on.
ab) I finally got all my plants in an online “bird & bee” database on Friday, and that now changes the way I see them - almost all of the “weeds” are native here and are good for insects etc., even ones I thought were invasive. 7 are considered (potentially) invasive.
ac) Confusing that that database says organic insect seeds I bought and planted are all flowers that aren’t native here.
ad) It’s paid off to have zero tolerance with any fungi on ivy leaves this year. Esp. after having learnt that ivy is native and useful. Native praps meaning I don’t need to protect the firethorn or the lilac from it, altho they’re also good for insects?
ad) The area under the cherry where “nothing” grew, not even moss, is turning more and more into a tiny forest with the dead mossy branches, 8 replanted ferns, stinging nettles, some ivy is coming on after all and the replanted Nicandra, the apple of Peru/Sodom has done quite well, wonder if it’ll manage to blossom again like the others, the solanum nigrum nightshade didn’t really make it. I love the hedge maid patch there, hope they’ll increase. See where I can still get the snowdrops I was going to replant in the green Jan/Feb between all that…
b) Bird life:
ba) I thought I’d seen a pair of goldfinches jet past under the balcony the other day, now I could watch, photo & film them at heart’s content.
bb) A buzzard large as life on the roof opposite my window on Sunday morning. But why a jackdaw was keeping him company rather than the carrion crows I often see flying behind birds of prey I don’t understand and am curious.
bc) Woodpigeon Duey visited us once again, I thought he was caring for his twins, his wife BobStar is on our balcony or pavilion very often.
c) Animal life:
ca) Bank vole loudly eating something in my pot area, even directly in front of me, but invisible in the dense green.
cb) squirrel eating and partly collecting and probably spreading all the hazelnuts a friend is bringing, altho I can only see some are still there, opened, most have disappeared.
cc) Our guinea pig with chewing / tongue problems is now eating a bit in the cage, but we’re worrying a lot as his weight is often down at the moment and he’s often not taking food we’re offering.
d) Plant, bird & animal life:
da) 2(-3) (European) goldfinches - rare here in the garden - spent over half an hour feeding on my evening primrose seeds. Now no one has a chance to argue against me keeping all the wilted flowers up till spring.
db) Learnt to use my phone for filming better: HD and zoom does make quite a bit of difference.
dc) The time has come for the blackbirds to pick up the nice moss areas that have been growing on concrete. This year I know that is an important source of food, so I’m feeding them by putting the moss back afterwards, so insects can collect under it again.
dd) The past few weeks various kinds of bees have been feeding on the ivy “blossoms”. Now it’s wasps instead, strangely.
e) Human life:
ea) Nice to share a few things with my wife.
eb) Good she’s overcoming her cold and I didn’t get it (I believe I can sense when I’ve been too close too long, so like with CoV in shops keep it short. Ate on the balcony, nice and fresh, long johns help.)
ec) She was happy and keyed up coming home after a musical theatre performance she went to with a new friend. Good to see as she’s got lots of reasons to be sad and worry, what with guinea pig, my and her own health problems and quite a bit of stress at work and in the world which she reads too much about.
Simplified: -
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