2024-05-28 Tuesday
Summary:
- LDN May 20th- 3.5mg (Mar 21st- 3mg)
for Energy “30%” , partly usable = 18% (
), energy profile “slow”, TT n/a, jackknives , walking / cycling 20’ (). - Creatine monohydrate Apr 9th- 2x5g for more slow energy.
- Triggers: 2 bites on belly next to navel after forgetting to oil, even tho I had hoodie over t-shirt, but open.
- QCS at 4:35 ➔ 3h deep sleep . (Nux vomica yesterday praps improved sleep too?)
- Thoughts: Gotta try to keep a check on the amount i do, cos of the extras.
- Feelings:
- Cheer: Swifts flying very near to the balcony and to neighbour’s natural nest. So much rain: 1+16+12 buckets: No more empty buckets left! I’m a rain millionare… Making these slug days.
Audio and Pic(k)s of the day:
Whilst you’re looking at all the pics, you might like to click to listen to 4’27’’ minutes of Blackie, “my” blackbird (and a neighbour’s kids), altho I doubt anyone will understood why I love him so much? You may have to listen again and again, like me… Beautiful, imaginative and cheeky (that’s the squeaky end notes)…
Such a pretty one 
, my favourite names are leopard slug / Tigerschnegel. And he doesn’t just look formidable, he’s enormous (usually up to 15cm, I think this one was close), apparently very healthy for every garden, and likes other slugs… eating them, that is (but it’s controversial how much):
No idea what to do to solve the mystery of what this (fruit?) is. Praps try the plant app or ask RHS advice. They’re 5cm long, pretty big:
My cherry If I laid it down is as big as my garden. I can look up and believe I’m in a wood. I am in a wood. This tree is so wonderful:
The same in opposite perspective using the sun / shade contrast… - that’s life, ey, sun and shade?:
And again twice almost the same, but a different green bug, and a hazel leaf from the bottom with sun shining thru turns it bright red, from the top it’s a wonderful brownred.
Which bugs I gotta research… edit: OK, the first is likely an oak bush-cricket / drumming katydid, the second either a green leafhopper (Binsenschmuckzikade, cicadella viridis) or rhododendron leafhopper (Rhododendron-Zikade), whatever - likely a larva, cos more yellow, the adults are bigger and greener/coloured:
These hedge rose buds on the street flowerbed opposite my window inspired me…:
…to look more closely at the buds in my garden too:
I think this is a ladybird larva on mugwort/wormwood, I’ll research more - edit: yup, as I thought, it’s the larva of an Asian ladybird / lady beetle:
Now the swifts are flying low and very close to the balcony, they’re much bigger than my mind believes.
Here they’re flying to the natural nest in the corner of neighbour’s house. Hard to see which way round they are - they like flip flop flying on their backs!:
Hatching swap: Woodpigeon leaving is flying towards me (and then turning sharp right), the woodpigeon coming is sitting on the left of the nest and picture.
LDN: May 20th- 3.5mg (Mar 21st-May 19th 3mg), click for effects/dosage...)
10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. (Slowly up from Oct 1st ~0.07mg.
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT n/a, moving ➔ 80%/3-4 (✅), balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "78%" (❌) and sleep 7h31 ✅ (vQvCS: 4:35 ✅, "PPA": 2 ✅). Energy profile: slow to very, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 7h31, all deep ✅, QCS at 4:35 QCS = very quick very cold shower (first unnec due to LDN, but started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).
Sleep 23:05-7:50 x5’, 0 deep doze. Sum: h55+7h50-(39+35=)74’ = 8h45-1h14 = 7h31.
23:05- bed after back exercises
0:37-1:16 39’ q6
4:16-51 35‘ rain 10‘ QCS, but still a hot flash after, so NSDR just in case the QCS couldn’t neutralize carrying the 16 buckets, and it could.
-7:50 woken up by the alarm for today’s allergist appt, but deep, bites big and red, but didn’t disturb too much. Left foot got wet at night cos my left shoe wasn’t water tight, so had to change socks at night, but still a bit wet, so slight sore throat.
Managed to keep colleague’s mail off my head, wasn’t particularly worrying, just asking for contacts and stuff.
2) Watching TRIGGERS, esp. of exhaustibility. 12:11 2 fresh bites on belly next to navel after forgetting to oil, even tho I had jacket on, but open. Histamine foods: 20g goat cheese (✅), x specks of marmite (❌). Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(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!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(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).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(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%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(3) DOCS: 16:01 when doc office called me to confirm next appt. June 3rd, I asked it to be postponed and later in the day than 8:20, so it’s now 26th at 8:40. Not sure if that’s helpful, but on 2nd thoughts it’s good to pull these appts. apart. Click for latest (April 26th) details.)
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): Last seizure May 27th (1): 6 days without. Last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1) 13th (1). Click for latest (May 13th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - May 27th (1) 21st (1) 13th (1) & 2nd (1). Apr 22nd (2) & 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st 2024. 2023: Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCKs May 7th. Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. May 27th (1) 21st (1 after TT probably from forgetting GABA the day before) & 13th (1: too little sleep) 2nd (1: after TT) Apr 22nd (2: after TT), 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. 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: May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/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. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. LDN May 20th 3.5mg (Mar 21st-May 19th). 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 92%
Lessons in self-care:
- Difficult noting breaks from blogging to see how long it’s taking. But I don’t really care how long it is, it’s just to get a better feeling for it. It took about 2h Monday.
- 22:59 Silly to look into forums and work mails, but that was cos I forgot to get something done. Colleague mail excited my brain cells, but managed to keep it off my head quick.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
- Near to the 2nd composter 2 halves of something like a kind of fruit, don’t know what they are tho.
- Pleased that the RHS sent me study results native vs. Non-native that only slightly favoured native, which very much contradicts the German stuff I’m reading. German research says it’s not just about pollinators, it’s mainly about leaves, whilst the RHS study only concentrated on pollinators. So this is giving me another rabbit hole to dig into. Not just a reason to be cheerful tho, it’s “disturbing” too, so a reason for self-care, too.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies (Dunnocks) Great&BlueTits Jacks Chaffinch (Chiffchaff) Collared dove Blackcap Swifts 12x Birds bathing 2x ) Latest / earliest robin song: …22:05 (blackbirds stopped at 21:52, robin started / 4:00… - well into it when I was up at 20’ (10’ later/earlier since May 16th).
(Regular cheer, song/calls/seen: Don’t think any extras. Yeah, dunnock only sometimes again to be heard, and chiffchaff more in the neighbourhood, but also some others I can’t distinguish yet.)
Swifts: 10:47 landing in the natural nest up in the house next door, taped them.
Woodpigeon: 11:50 well tucked in on the nest, can’t see irregularities.
Sparrows I think, or something sounding similar.
Robin 12:19 singing loudly above me
14:44 blackcap
Blackbird: 16:17 Blackie sang near so I could tape in good quality almost 5 mins. 21:52 Blackie singing 30‘ cos he loves singing in the rain.
21:57 Blackie stopped at 52 and neighbour robin started
16:53 Pigeon Taubenschlag, Brieftauben, flying around in a circle above in the neighbourhood, I didn’t know (my wife did).
c) Animals: (guinea pig antics . Redbrown squirrel )
Bats Bank voles 0 (more back of garden now). Insects: bees, bugs
Slugs: * 7:51 in 1 composter there’s 22 Iberian / Spanish slugs, and 2 tiger slugs. 7:57 another 3+ slugs around, in composter 2 3 medium to big slugs, 12 littl’uns, around there, plus a big spider, cobwebs all over the composter with slime mixed in or on, wonder they did that. That’s from all the rain.
Insects: * 10:47 insect counting weeks coming up. 15:33 A new Insect app can help find out the t00 most common ones, that’s a great help.
e) Human life: (TT laughter Skip-Bo Wife Art Music listening Nice talks )
f) Environment: (Outdoors .) Rain: 22:54 only 1 bucket after hours of rain, but 4:40 barrel = 16 buckets full! (And again in the morning and later.) No more empty buckets!
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain ().)
Click for development/summaries and see profile...
More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023