2023-11-02 Thursday - recovery?: slightly better, despite 1h playground yesterday. CVD med side effects? Down by spreading, despite praps increasing very slightly. LDN? (Nov 1st on 2x0.5mg): Doubling may be working, didn’t cause side effects at first, not even sleep like I feared, but I’m getting more and more agitated and GI problems over night.
What … worked / went wrong … today:
Brought excitement down a bit more, but still a lot to go.
Habit encouragement: time management (✅), self-treatments ✅:
Time (= stress) management: Blog earlier 
, forums less , jump off hamster wheels (), 3rd meal 18:00-19:00 
.
Self-treatments: Horse stance , balancing .
How was I today?: Feeling 85-90%-ish (), energy today (, relatively), sleep Wednesday night , sleep Thursday night () - too short.
Mainly working on time management , energy with LDN /, keeping spirits up /().
(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ (cycling 60'!) & heaviness ✅ incl. for walking ✅, fine motor skills ✅, stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. Side effects ❌, overactive, hyper, agitated, heartburn, diarrhea, weight decreasing. Click for details on dosage and symptoms:
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.
VLDN 
for:
- Energy up from 10% to 18%: for activities - I’d say 20% considering cycling 60’, walking: up from 5’ to 30’ - , listening: up from 3’ to 15’ () - I’ve been regularly re-training listening to music in very small doses but shouldn’t overdo it, TT
fine motor skills and available short term energy , stiffness - fine, shorter recovery times - good, all constantly . But 
: still yellow/white face, black eye rims and white lips. - Pain: overall Ache - OK-ish, local: lower back - good, less - only short, hangover - nope.
- Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
- Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - .
Nothing really since Oct 18th , except 20th: hangover 3h, but getting more agitated & heartburn Nov 2nd, diarrhea morning 3rd.
CVD med effects?: Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.
24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 30%, talking 30%, counting 0%) ➔ 80%/4 (✅), gardening/moving / cycling slowly 60'! ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 15' ➔ 80%/3 (✅) - better. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep (✅) - 6h28, up 3x (1h22), all deep, but too short, awake early, maybe from doubling LDN. ✅, heart thumping, organic cotton underpants itchy I guess from dye, sore throat 30% from cold but sinuses 20% from warmer ❌, 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, 2h slow, 5h30 medium, 30' quick
SLEEP (click for details): 6h28, up 3x (1h22), all deep, but too short, awake early, maybe from doubling LDN. ✅, heart thumping, organic cotton underpants itchy I guess from dye, sore throat 30% from cold but sinuses 20% from warmer ❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.
Sleep 22:35-
NO PLANT ID AT NIGHT - MUCKS UP MY NIGHT & DAY
23:45 6 55’ heart thumping at least 15’ after, I think unusual.
2:35 12’ fl9’ Kids with fireworks as if Nov 5th Guy Fawkes Night were coming up. Is being overstrung & heart thumping from doubling the LDN? But I think the heart thumping was on the 30th or 31st too, as my wife said, and I doubled on the 1st.
4:30 15’ Organic cotton doesn’t mean organic dye - my cheap new long underpants claiming to be out of organic cotton are itchy. Researched that. fw4’. Sore throat, heating wasn’t on, but 18°C, 70%.
-6:25 Better after switching underpants. No sore throat, now heating has brought the temperature up to 19°C, but sinuses left 20%, probably also from that. And heartburn increasing, I think cos of the LDN. Weight digital 75.4kg, analog 80-3=77kg. Decreasing.
Sum: 1h25+6h25-(55+12+15=)82’ = 7h50-1h22 =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Phoning with the patient management of the hospital about the unexpected extra bills was a strain, esp. when I still wanted to understand a bit more and she was 'finished' twice, but I was persistent, now understand, and have the hope that at least my semi-state insurance will absorb those costs, so it'll be less than 1000€ and also know what to watch out for next time. Lot of cycling and then too much plant identifying again in the evening, that's the LDN I think, need to counteract it. 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.
Summary (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 VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.
3) DOCS: Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.
Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.
4) UNDER CONTROL ✅ (attention necessary (✅)) - weight decreasing further:
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 - focal seizures Oct (26th-)27th (1). Oct 18th/19th (3). 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 - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: 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: 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. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. 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.
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. 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. 16th: Silymarin 2x.5g now, LDN 0.25mg. 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?
Organic cotton doesn’t mean organic dye - my cheap new long underpants claiming to be out of organic cotton are itchy, had to take them off again at night. Wash or return?
Quality of life: 90%
Lessons in self-care:
Need to get a grip on myself cos doubling the LDN is making me hyper too much. Or reduce again.
Reasons to be cheerful:
a) Plant/fungi life:
aa) The biggest mushroom is turning colours, I’m taking at least one pic a day, and am curious if the other 3 will get as big.
b) Bird life:
ba) Out cycling for guinea pig grass the jackdaws were gathering over the fields slowly aiming to get back into town to the trees near us.
bb) Loud geese squawking while flying over the garden after dark.
bc) Crazy chattery solo Magpie around again.
c) Animal life:
ca) Now feeding Harley with care stuff is working, but I’d hoped for more.
cb) Thought I was on to a big thing following better web recommendations first - but my wife is change resistant, not a good day today to discuss that, let’s see.
f) Environment:
fa) Wow, what a wind, exciting, but in a positive way.
fb) It provided lots of laughter during table tennis, balls stopping in mid-air, or flying to and fro.
g) Body:
ga) Great how I’m able to move a bit more now, and even cycle longer.
Simplified: I spose leaving tha a)-g) of areas to be cheerful about is a reminder that I couldn’t think of anything in that area. (Often happens when I write the whole entry next morning.)
Foggies: Dropped laptop twice, Thurs eve (stone) and Fri morn together with whole of tray, still working well, luckily. Combination of worrying/agitatedness about Harley and from LDN.
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