JayCS’s Fibro Blog

JayCS · August 12, 2023, 1:26pm

2023-08-13 Sunday - hospital for vertigo, nothing being done today, but a few things & results tomorrow, recovering from all the exams Thurs/Fri

(No sense in trying methylene blue in the near future)

What … worked / went wrong … today?:

Sleep no more than 8h, early sun, air all day, screen curfew at 8: nope, too busy writing.

How was I today?:

Feeling 80%-ish (), energy today (), sleep Saturday night (), sleep Sunday night (), nausea 0(-10)% (), fog 10% (), no bites .

Today working mainly on … recovery

1) Early circadian rhythm for a) energy/sleep & b) Ache

7’ workout? Quite a few walks, and 1km on a standing bike in 3 minutes - not bad, ey? Once Saturday, once Sunday.

1st meal a bit later, 2nd & 3rd early (slight intermittent fasting): ,
whilst keeping food amount up . IF = 13/11 (from 8:00 to 19:00)
Bed early / up early , screen time down → Effective sleep ().
“PEM” vs. “Ache without exertion” = post postural Ache +:x:.

Since June 20th often winning (but hardly talking, not counting/picking up balls). First, 2-3 weeks 6-8 games a day, then 2 weeks holiday break, July 22nd-26th only 4 games a day, mostly won. July 27th 0:1 → 5:1, easy. July 28th-30th 4 games. July 31st to Aug 4th impossible cos of uro, Aug 5th 2:0, 6th 1:1, 7th “5:1”, 8th 5:1, from 9th on impossible cos of stroke exclusion.

1a) EXHAUSTIBILITY today: “92-90%". Changed Aug 11th: Symptoms and energy 10-20%: ALTOGETHER UP from June 21st from circadian rhythm, except 1) DOWN July 19th to 24th from bird deaths, 2) DOWN July 31st to Aug 6th from uro exam and methylene blue, 3) DOWN since Aug 9th due to "severe vertigo" etc. Click for today's ENERGY profile/envelope (= moderate?/slow?, with "15h rest").

R rest: 100% exhaustion 90% of the time (15h),
VS very slow: 60% exhaustion 10% of the time (1h),
S slow: 40% exhaustion 0% of the time (0h),
M medium: 20% exhaustion 5% of the time (0h),
Q quick: 0-10% exhaustion 0% of the time (0h)
(pre-fibro: 0% exhaustion 100% of the time.)
Development of ENERGY from June 21st 2023 on:
UP: June 21st to 30th BETTER, to 20-24-18…-22-24% (short hope!, max. 24% on 25th and 29th,
DOWN 1st July LESS (16-20%, dunno why), but further symptoms down too.
DOWN July 19th-24th LESS (14-16% from 3 bird deaths),
BACK UP to 18%+ July 25th to 30th, DOWN to 10-12% from uro exam and methylene blue July 31st to Aug 6th, UP to 18% Aug 7th/8th.

SLEEP (click for details): 7h39, up 4x (29'), quite a bit shallow, at 4:30 NSDR nec. (❌) 80%/2/5% p0 st2-3? air/// drymouth30% sore throat0% tongue20% nostril/s10-0% nausea0-30%, everything else OK ✅ ➔ Feeling 90% well, Ache 2 of 7 ✅, getting up: 80%/2 ✅.

3rd meal time /, screen time /, tired /. GABA A2?+A3?
A3 A4:0 teeth0 p0 FA/CS#0 HWB#0 Sleep 22:15- 3rd # is LBU
23:36 8’ 80%/2/5% p0 st2 sip fw2’ deep/ air/// A4/
drymouth30% sore throat0% tongue20% nostril/s10->0%
1:00 6’ A5/ p2
2:14 8’ A6/ (p1, dunno why I woke up) (teeth) nauseous30%
4:32 7’ A7/ nauseous30% NSDR/shallow, but didn’t hear much of it after all.
-6:23
Sum: 1h45+6h23-(8+6+8+7)29’ = 8h08-29’ =

1b) ACTIVITIES ➔ ACHE = PEM (Post exertional malaise): hardly moving, cos ➔ 80%/4 , talking ➔ 80%/4-3 . White lips60-80 () - said my wife, yesterday too.
1c) REST/STIFFNESS ➔ ACHE At night st3 → 80%/3 () Getting up st3 → 80%/3 /, Later more after doc talk ()
Where stiffness, where Ache? Muscles rather than tendons.

2) Histamine/MCAS symptoms

Nauseous sinus burning headache: Nope .
Tongue burning: Slight ().
Excitement : No, not until the doc talk around 10:30

JAB#3 (on Nov 7th 2022, updated Aug 11th 2023) HISTORY: Caused MCAS / histamine problems like the first 2. Esp. ENERGY DOWN further to (10-)15-20%. 20% is the new energy-"ceiling" since jab#3. Each jab -5%. Plus new symptoms Jan. (TCM) / Feb. (T4) / Mar. (CoV) DOWN to 8-12% by end of May (17 triggers, starting 20th). Better to ~18% from all this starting June 21st, but triggers regularly bringing it back down to ~10%, see Energy Exhaustibility (moved that there Aug 11th). Triggers: Foods (esp. soy, white beans, yeast spread, >1/2 banana), grasses slightly, Click for developments....

JAB#3 (on Nov 7th) → MCAS / histamine since end of Dec: 15-20% energy for under 45’, then white lips & pale face. But if I keep strain down to ‘half speed’ (70%) I can push on thru for hours - with a few breaks and lots of task-switching. Not that much specifically histaminey problems since end of Dec, occasionally sinuses and nausea, no more ill ache. Usually white lips & face 30%, and some sliding instead of walking indoors 10%, bit more cold intolerance 30% (long johns 24/7, 2 thick duvets at night). From Jan on, bit warmer (5-12° C), I’ve swapped long johns for a 2nd pair of pyjama trousers at night and when I’m pretty active at daytime sometimes no long johns, but when out slow cycling/walking. And don’t need hot water bottles any more, whether I can manage a cold shower (usually) or not.
Development summarized (important reminder): Down: Nov 17th - Dec 1st, worst 17th-18th, best 20th & 29th. Up: Dec 2nd-6th, Down 7th-8th, Up: 9th-14th, best 13th-14th: Winning easily 4:0, and slow energy for 4h! Down: 15th-21st 7 days, Up 22nd to 24th winning roughly 3:1, Unsure: 25th-31st: TT 2:2 or no play possible: 25th 2:2(?), (26th 0), 27th: 2:2, (28th 0 - ordered supps, not cellar), Down: 1st-2nd, 4th. Up: 3rd, 5th. Both: 6th-11th - sinuses, tongue, lips, runny, DAO helping. Cold: 12th. 13th: GI: HP supps? 14th: B3-Flushing up!? 15th: Runny nose, 16th-21st & 25th-26th…: Tongue off and on. 23rd-25th: Sore buttock (& leg) muscles like after the jabs since 23rd. 26th: Cold, pain & fatigue, energy from 18% to 10% since 19th. 27th: Bad. 28th: Bad to better. 29th: OK, considering. 30th: Foods slightly histamine-y. 31st: Still no appetite. From Feb 3rd on: 10% energy. Cold tolerance good, just not my fingertips. 8th: Bit of tongue after red beans, but OK. Feb 12th 6:00: Stronger histamine-y symptoms and stomach pang. Feb 15th: strong headache evening and night probably from red beans without DAO, praps also the sinus burning. Feb 18th: More energy for the first time. Very red lips, looking inflamed, go white when I press them together. From Feb 19th on: back down to 10% energy, everything else fairly OK, incl. at night, incl. cold tolerance, incl. fingertips, but lips’d be white if they weren’t chapped and inflamed. Feb 24th: Energy up to 14% due to specks of T4. Feb 26th: sinuses upon waking up 9:20… Energy up to 20% from T4. Mar 10th evening: Virus Ache of 5-7, underlying energy seems unchanged 20%. Mar 12th: all Ache und pains decreasing, urge better until I move, but no appetite, nauseous when I do something slightly strenuous, and dry coughing like mad a lot of the time. Mar 13th: Histaminey burnt tongue and feverishness after 1h intense ‘work’ phone call. Mar 16th: Still some histamine rests, but energy vs. histamine like before CoV, praps less stiffness, but less appetite. Mar 23rd still seemingly in the midst of a re-visit of the "CoV symptoms. Mar 24th still severest exhaustion with feverish ache despite energy, appetite increasing, bladder a bit better, cough not sure. Apr 4th: Found out that we’d got CoV from a person who hadn’t taken theirs seriously and hadn’t told us immediately that they had it: grrrrrrrr! Increasing GABA has stopped all bladder problems, but not yet all sinus burning. Apr 11th: CoV-cough and bladder seems to be recovering, T4-temperature/night sweats too, now appetite needs to recover weight… Awake at night 1h and tongue burning for >24h from banana and tuna. Apr 15th Histaminey sinus “cold” 21:00-24:00 after too much concentrated soy products. May 1st: strong histamine symptoms after 100g of washed white beans without DAO. But shows that the recent higher histamine symptoms after CoV have got better. May 16th: Soy yoghurt & yeast veg. spread without DAO. Try again with DAO! Effect: Wide awake at 4, needed extra vagal relaxation to continue sleep, woke up with sinuses and frontal headache for 20h, then also awake at 4/5 the morning of the 17th. Evening of 16th: 2 DAO, continuing that. May 28th: sneezing in the evening while being outside, looking up: grasses (usually only short / one day). May 29th: Only itchy nose, less in the countryside. and at the end: People stress end of May for a few weeks. Energy up from June 20th.

Treatments: Antihistamine, and extra GABA from Nov 29th. Stopping the antihistamine at the turn of the year quickly caused sleep problems. May 19th: Tried more yeast spread and some tofu with DAO before, but still got a strongly burning tongue, my sinus burning from talking too much didn’t get more. May 25th: Sinus headache in the morning, most probably cos of a whole banana in the evening without DAO before. Stopped antihistamine I think in April, cos of zombification, dry mouth and I think more, and sleep still good from everything else. Once for dentist June 23rd wouldn’t have been necessary.

3) Docs:

Last DOC update Aug 11th: Still more scans & "interviews" in a normal ward. Aug 10th: Lots of bloods, scans (CT & MRI), "interviews" in the stroke unit. Aug 9th: Suspicion of stroke cos of severe vertigo, wonky gait, high blood pressure. Aug 7th: Bloods taken for uro/onco. Aug 1st: Phoned about the forgotten bloods. July 31st: Uro exam extremely painful, so forgot bloods - would have been tough anyway. Urine sample was no problem. The talk was disappointing in that he is nice, but definitely no oncologist, so it will still only be a pointer for cancer. July 26th: Phoned urologists/oncologists, the man at the reception was very friendly and asked helpful interested questions, I'm not used to that at all, and I got an appt. for next Monday, 31st, already, praps cos of the summer holidays. The urologist I'm assigned to has 3 reviews that sound promising, and "looks OK", young, interested and caring, like the reviews say. July 20th (added 25th): Got my onco labs at last: only eosinophilia visible to me (put the research on the 25th), GP has no idea, which warrants getting a "2nd" opinion, in absence of a 1st. July 13th: Unsuccessfully asked for my onco lab results. June 24th/25th: Teeth problems resolved for the time being. Waiting for onco report, “2nd” opinion or not? (“B symptoms” = night sweats, appetite, weight starting Feb/March resolved in June.) Click for details…

Click for details: Aug 11th: Still more scans & "interviews" in a normal ward. Aug 10th: Lots of bloods, scans (CT & MRI), "interviews" in the stroke unit. Aug 9th: Suspicion of stroke cos of severe vertigo, wonky gait, high blood pressure. Aug 7th: Uro/onco-Bloods. Jul 31st. Uro/onco appt. June 23rd: New filling good (anithistamine druggy). June 13th: Gum inflammation down (to 20% from December), so keeping tooth, but renewing filling on the 23rd. May 24th-26th: Only my reports back, no appt. or further report. Apr 24th: Weird, 20' onco appointment, no feedback. Apr 20th: Bloods OK, except PSA: prostate too high = cancer check. Apr 9th: Night sweats have inside of 2 nights switched over to the opposite extreme: cold, needing full winter bedstuff & sore throat. Apr 6th: My gyn(!): mamilla OK now. Apr 3rd: surgeon says wait with mamilla swelling, Mar 30th: lung X-ray OK (cough), Mar 29th GP says possibly B-symptoms. Early March: Antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms. 3% of a T4 for thyroid Feb 24th till Mar 23rd: more energy, but lost appetite and weight. Feb-bloods: Ω3 needs increasing, much too low.

GP’s antifungal cream for my lips Feb 28th, then Mar 1st tea tree oil cream, helpful, but never quite gone. Repeat of antifungal cream stopped it.
3% of T4 Feb 23rd-Mar22nd: Day #4 bit more than the days before: Slower energy, histamine-y sinuses and frontal headache. Decreasing improved all that again.
Bloods Feb 7th: Most (like WBC, B2, phosphate and protein) are better, but still keeping those going, biotin and manganese too high.

4) Under control, attention necessary /():

Annoyances
Tea tree oil on onychia and fungus on my right foot. Improved, but toe still a problem.
Beau’s lines on thumbnails: Reduce washing , olive oil soap , moisturize /. 7/8mm healthier thumbnail now.
Gum inflammation: free , calendula .
( I never lose pee at night , but why?)

1) Symptoms well under control: GI (via elimination) except bloating and diarrhea from 20ml of a juice mix my wife gave me for decreasing blood pressure ❌, pee (via GABA: ENOUGH ✅), LOCAL PAINS (exercises, back: via using wall/door for support) ✅. Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest .

2) Symptoms fairly under control - click for details on Weather: SUN / WIND ✅ (layering off and on all the time), THIRST (✅), dry mouth (day and) at night ❌. Last SEIZURES: Aug 9th: 2x. Aug 1st: 4-5x seizure-ish, so again GABA up, added 2x sublingual. July 25th seizure-ish 3-4x, so GABA up. July 17th: 2x. July 7th seizure-ish 4x. Jun 23rd 4x, Jun 16th, Jun 6th 2x ❌, May 25th 17:40 & 21:00, May 14th/13th, Apr 16th/15th, last ESOPHAGUS BLOCKS: Aug 8th, July 23rd & 16th, May 31st (all 3 cos distracted), before that Apr 4th ✅. JAW solved for the time being since June 23rd. ✅

Weather: Outdoors almost all day now, for energy/sleep from light and air - not too much pure sun, that’s all, but getting better used to it.
Dry mouth (day and) at night has always been a problem, a stronger added real thirst making me drink a fourth litre of almond milk a day came up in April. Stopping the antihistamine completely has praps helped stop it become painfully sticky at night, so I don’t use the gel much any more.
Last focal seizures: 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 seizur-ish 4x. 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: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. 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…
Jaw: Hardly & seldom pain since Nov. A bit more in Jan. Jan 6th: Slightly psychosomatic from memory of a painful time. Jan 10th: A bit after tooth cleaning. After: regularly a little bit, 1-2x/d. Better since improving tooth care again and giving that side of the jaw a rest from chewing for a few days from Feb on. May 18th (and about a week now, so let’s say from May 10th: 3 tooth problems, like often it seems from food stuck between teeth which I can’t get out. Trying sucking it out with liquid, either almond milk or calendula essence, but it’s stubborn as heck. Immediately improved when a broken filling was taken out May 22nd. June 6th: I think I need to get both teeth done, cos they’re causing a lot of problems that I can’t prevent any more… - June 23rd: OK, the fillings were enough, solved for the time being.

Treatments under control: SELF-TREATMENT & SUPPS optimal & stable, but necessary - Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Aug ~1st: pine bark again, + methylene blue + polysterols, Aug 5th Feverfew & PQQ again. July 25th (updated almost everything too): Increased eleuthero, decrease theanine to 2x0.1g and quercetin, added EGCG, all 4 in the B-supps. Next: Methylene blue! LDN! Creatine?

SELF-PHYSIO (click for details): OK. Wrists: more (✅), jaw-joint: to do (❌). Air + light + movement all day. ✅ Cold showering every day ✅.

airing 5x2’, cold shower 1x(10’), cream/oil fc/ey/hd/ft x1’, teeth x2’, HWB 0x3’, breath exercises 5x1’, Y. Nidra 0’, massage gun 0x3’, daylight lamp/sun 6x5’, plantar/calf stretch x1’, acupressure 0x1’, palpate 0’, belly 3’, back 10’, !!aloe vera 0x1’, twist-stretch x1’, yoga/stretching x1’, hang x1’. wart x1.
Combine: next?
hunchback-pillow 0’. neck 1+ x1’, RR: 0, neck 2 0x1’, workout 7’, horse stance 1’, balance roll standing 5’, breath-hold 12’, jolt-jump 1’, marionette-hang 1’, shaking dance 1’, bent leg fall 1’.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Schedule TODAY: OK. Aug ~1st: pine bark again, + methylene blue + phytosterols, Aug 5th Feverfew & PQQ again. July 25th: EGCg again, eleuthero up to 3 and above, quercetin down cos of more rutin than suggested, next: theanine divided up into 2x0.1g? Creatine? Colostrum again?? ATP?? Click for details on the lists, with dosing batches by times and tubs:

69€/5000 capsules = 0,0138€/cps, x49/d atm = 0,68/d = 20€/m.

ZERO now: Arg, alpha-GPC 1x150mg, fisetin: 0x196mg, huperzia A, mumijo, NAC 1*.5g, NADH, psyllium (Ps), Ribose, rupatadine/Rupafin, Serrapeptase, Zinc, P5P (= vit. B6) 0x27mg (high).

REGULAR as of July 26th (42 supps): (R-)ALA .2g, aloe vera juice 0ml/d, apigenin 1x50mg, vit. B2 3x1x600mg, vit. B3/Nia (2+2+1)x0.6=3.0g, vit. B5/Panto: 3x1x.5g vit. B12 (methyl-C) 0x5mg/4m s.c., BUT B12 1x0.2mg (all 3 good types) WITH vit. B9/5-MTHF 1x0.4mg, vit. C 3x2x.5g, L-carnitine (Cr) (3+3+2)x0.6g, copper (Cu) 0x2mg, vit. D3 20.000 IE = 500mcg, WITH vit. K2 (MK7) 200mcg, DAO before EGCg 3x1x(50%, incl. L-theanine?)113mg, ellagic Acid (Ell) 2x.2g (+43mg vit. C), eleuthero (eleu) 3x4.5mg, feverfew (fev) 3x.4g WITH 3x.2g MSM, GABA (Ga): 4-8x0.3g+2x.6g=2.4-3.6g, ginkgo (Gi) 3x168mg, (L-)glutamin (gltm, glu): 1x0.6g, glutathione (gltt) 4x250mg, honokiol (hon) (2%)x2x.4g=16mg, luteolin 1x.2g, magnesium glycinate (mag gly) 0x50mg, mag malate (mag mal) 0x45mg, mag threonate (mag threo) 3x2x50g, monkfruit 0-0.1g, myo-inositol 1x2x0.5g/1!-2d, olive leaf extract (oli) 2x1x.75, Ω3 1x5mg, passiflora (Pf) 2!x1x.35g, Levagen±PEA 1x0.3g, pine bark (pin) 2x1x.5g, PQQ 1x20mg, CoQ10 (Q10)(ubn) 1x.1g, quercetin (Qc) 3!x1x.5g (down in B-supps cos more rutin than suggested), resveratrol (Rs) (50%) 2x1x.4g, rhodiola (Ro) 2x1x.35g, rutin (ru): 1x522. SAM-e (Sa) 1x2x.1g, Selenium 0x.2mg, Silymarin (Sil) (80%) 1x.5g (+83mg L-cholin), (L-)theanine (The) 1x.2g (+.15g polyphenols) (next 2x0.1mg), TMG: (1-2+1-2+1)x0.6=3.0g (as much as B3). NO rupatadine/Rupafin in micro-amount (0.1-0.3mg) as often as needed since jab#3 Nov. No longer practitioner’s recommendations, cos lost appetite ((#1) masterwort / Imperatoria ostruthium, #2) Hexacyl (Sulphur D4, Lycopodium Ø, Berberis Ø), #3) add Steirocall comp. (for “arthrosis” & bones) (& umckaloabo). Not at all sure about any of these, after 3 weeks of Hexacyl, #4 bitter herbs when Hexacyl bottle is finished, #5 more B5 now, #6 “glutathione activator” → upping MSM, selenium, and have asked if manganese and vit. E are important. #7 Pro Mucosa: added Hericium, can’t increase glutamine, asked back about ficin and biotin, #8 Chlorella, #9 B9 as 5-MTHF for homocysteine.))

What-when-details: Updated July 26th.
“16:00” preparing pills
“17:30” A1 PF#1:0, 2x threo., Lut, Qc#1.
5’ “empty time” = to see if I need worry time.
“18:30” 2 myo-inositol + teeth
“18:30” A2=12+1 1xvB2#1 1xvB3 vB5#1 2xC#1, 2Cr#1, PF#(2->)1, 0Cu, .3gGABA#1 1xTMG#1. Meal: 1PQQ, 5ml Ω3, CoQ10 (oil) &! 0 Se & Hon#1. monkfruit.
Meal 20: ’ Back exercises. 2x glutathione, 1x phytosterols
“20:30” pre-A3 agigenin 1h before bedtime + teeth
“20:30” 0chamomile
“21:00” A3 PF#(3->)2, 0.3gGABA & .6glu & Qc#2 Hon#2 + 1%:0 Rupafin or A2
“2:00” A4 .3mg GABA + teeth
“4:00” +0.25 GABA etc., A5-A8, according to pee pain and seizure-ishness
B=11/ in sun/lamp “07:00” R-ALA, Ro#1, Qc#3:0 Rs#1 2xSAM-e EGCg (from July 26th again) 3xEleu (forward from C to B-batch, maybe slowly increasing, even to 4g/d!) + Fev/MSM#1 + Sily +0.2->0.1The.
Back exercises
0 Soak pumpkin seeds & almonds.
Teeth.
C=20 with meal: 1xB2#2 1-2xvB3#2 vB5#2 2xvC#2 3xCr#2 .6GABA#4+, gink#1, Oli#1, pine#1, 1-2xTMG#2 2threo. PEA Rutin = 20. (vit.D3 1/wk)
2x glutathione, 1x phytosterols
teeth
“11:00” D1(0) + Teeth (+2h/) Ellag#1, Fev/MSM#2, gi#2.
“14:00” Meal ’ in sun +aloe
“14:15” D=15/ ’ in sun vB2#3 1-2xvB3#3 vB5#3 2xvC#3 3Cr#3, .6GABA#5, gink#3 Oli#2, pine#2, 1-2xTMG#3
2x glutathione, 1x phytosterols
teeth
“16:00” preparing pills: 5x to encapsulate.
E “17:00” (“meal/acids+2h”) Ellag#2, Fev/MSM#3 Qc#(4=)3, Ro#2, Rs#2.
A1 “18:00”
myo-inositol
Eat + aloe + PQQ+Ω3 if not earlier.
A2 + apigenin & heating down
(B12 s.c.: 2022-11-04, 2022-04-10, 2022-01-10: B12 5mg methylcobalamin s.c.)
eve:

The day's supp-compartments (8', plus 10' making capsules), July 26th

Pf: A1:0+A2+A3, vB2: 1C,1D, 1A. vB3: 1-2C,1-2D.1A, vB5: C+D+A. vC:2C+2D+2A 8Cr: 3C+3D+2A, Ell: D0+E. Fev/MSM: B,D0. Ga 4-5x: C,D,a2,a3-a6(-a8), Gi: C,D0,D Glutathione: 2-3x after meals. Hon:A2.A3. MgThreo: 2C,2D,2A. Oliv: C,D. pine: C,D. Qc: (B.)E.A1.A3. Ro:B,E Rs:B,E SINGLE: A1: 0xMgMal, luteolin. myo-inositol (15’ before meal 1x/(2)d) A2: 0Cu (separate from P5P etc.!)+0P5+1xQ10 (ubiquinone <150mg/d!, not ubiquinol), 0x1xSe. (A2:Ω/Pq:meal, A3: apigenin) A3: Glutamin (0c1), B (or C): R-ALA, EGCg, 3xeleu, Ru, 2 Sa, Sily, Th, C: PEA, DAO before risky/all meals. monkfruit usually evenings, aloe vera. vit. D3/K2-MK7 saturdays. (A2:0Se)
TALLIES July 26th:
A1=7+1 Pf#0 Qc#1, Lut, 2 MgThreo + 2myo-inositol + (DAO?)
A2=12 1vB2#1 1-2xvB3, vB5#1, 2xvC#1, 2xCr#1, 0Cu, Pf#2->1, Ga#1:0.3g, Hon#1, Q10, 0Se, 1-2TMG#1 (0 Rup). = 12-14.
+Ω3/PQQ/0aloe +monkfruit +apigenin 10(+4) =14.
A3=5 Pf#3->2, Ga#1, Gltm, Hon#2, Qc#3
A4=1 Ga, A5=1 Ga#2 etc.
B=11 ALA, EGCg, Eleu more, Fev/MSM#1, Qc#3:0, Ro#1, Rs#2, 2xSa, 1-2Th, Sily (DAO?) = 10-11.
C=20 1vB2#2 2xvB3#2 vB5#2 2xvC#2 3xCr#2 Ga#(4+) Gi#2 Ol#1 0Pin#1 2TMG#2 (Eleu in B) 2xMgThreo PEA Rut = 20.
after meal: 2xGlutt.
D0=2 Ell, Fev/MSM#2, Gi, + (DAO?)
D=11-13 vB2#3 1-2xB3#3 vB5#3 3xCr#3 Ga#(5+) Gi#3 Ol#2 0Pin#2 1-2TMG#3 Fev/MSM#2
after meal: 2xGlutt.
E=5 Ell, Qc#(4->)3, Ro#2, Rs#2. Fev/MSM#3 = 5
B12 4-monthly, D3 Saturdays.

No ‘research’ today:

Quality of life

Lessons in self-care: All this hospital / med stuff is a tightrope walk / balancing act.
Reasons to be cheerful:
a) Found out many more plant names from photos in my garden.
b) Photographed many interesting wild plants around the hospital grounds.
Simplified: Doubt it.
Foggies: Doubt not.

Development

Click for links to "entry changes" (after June 19th 2023), "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

8 weeks after jab#3: stabilized
1st Jab-sfx-summary, last edit: Feb 7th.
My food 2023.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries
Research ToDo: supps webinar on Dec 2nd, fibro webinar transcripts, the MCAS summit, read

JayCS · August 13, 2023, 7:36pm

2023-08-14 Monday - hospital for vertigo - totally finished after a doc talk directly after a long heart exam, better 4 hours later, 2nd doc talk was OK, vertigo exam sent me spinning for another 2-3 hours.

(No sense in trying methylene blue in the near future)
Last Sat: energy! Fri energy %! Thurs energy: %, Wedn % Tues %, Sun & before OK apparently…
Last Sat OK?: 2x glutathione, 1x phytosterols NOT poly-!

What … worked / went wrong … today?:

Sleep no more than 8h, early sun, air all day, screen curfew at 8.
Totally finished after doc talk
Totally spun off after vertigo exam.

How was I today?:

Feeling 40%-ish , energy today , sleep Sunday night (), sleep Monday night ()/(), nausea 0(-10)% (), fog 10% (), no bites .

Today working mainly on … recovering

1) Early circadian rhythm for a) energy/sleep & b) Ache

7’ workout? Let’s see if I manage ‘dry’ cycling today? Nope.

1st meal a bit later, 2nd & 3rd early (slight intermittent fasting): (),
whilst keeping food amount up ()(). IF = 12/12 (from 8:45 to 20:30)
Bed early / up early / , screen time down → Effective sleep .
“PEM” vs. “Ache without exertion” = post postural Ache ().

Since June 20th often winning (but hardly talking, not counting/picking up balls). First, 2-3 weeks 6-8 games a day, then 2 weeks holiday break, July 22nd-26th only 4 games a day, mostly won. July 27th 0:1 → 5:1, easy. July 28th-30th 4 games. July 31st to Aug 4th impossible cos of uro, Aug 5th 2:0, 6th 1:1, 7th “5:1”, 8th 5:1, from 9th on impossible cos of stroke exclusion.

1a) EXHAUSTIBILITY today: “92%". Changed Aug 11th: Symptoms and energy 10-20%: ALTOGETHER UP from June 21st from circadian rhythm, except 1) DOWN July 19th to 24th from bird deaths, 2) DOWN July 31st to Aug 6th from uro exam and methylene blue, 3) DOWN since Aug 9th due to "severe vertigo" etc. Click for today's ENERGY profile/envelope (= moderate?/slow?, with "?3h rest").

R rest: 100% exhaustion 90% of the time (15h),
VS very slow: 60% exhaustion 10% of the time (1h),
S slow: 40% exhaustion 0% of the time (0h),
M medium: 20% exhaustion 5% of the time (0h),
Q quick: 0-10% exhaustion 0% of the time (0h)
(pre-fibro: 0% exhaustion 100% of the time.)
Development of ENERGY from June 21st 2023 on:
UP: June 21st to 30th BETTER, to 20-24-18…-22-24% (short hope!, max. 24% on 25th and 29th,
DOWN 1st July LESS (16-20%, dunno why), but further symptoms down too.
DOWN July 19th-24th LESS (14-16% from 3 bird deaths),
BACK UP to 18%+ July 25th to 30th, DOWN to 10-12% from uro exam and methylene blue July 31st to Aug 6th, UP to 18% Aug 7th/8th.

SLEEP (click for details): 7h10, up 4x (36'), all deep, like the others days seemingly shallower in the last 2h, but altogether good ✅..80%/2/5% p0 st2 air/// drymouth30% sore throat0-10% tongue20% nostril/s0-10% nausea(20-)0% ✅, everything else OK ✅ ➔ Feeling 80% well, Ache 2 of 7 ✅, getting up: 80%/2 ✅. 1x FCS (✅)

3rd meal time (), screen time , tired (). GABA A2/+A3/
teeth0 p0 Sleep 22:05- 3rd # is LBU
23:00 14’ 80%/2/5% sip st2 fw6’ deep/ air/// A4/ drymouth30% sore throat0% tongue20% nostril/s0/0% (nausea20% before sleep)
1:07 5’ A5
1:27 5’ A6
4:02 12’ 6 A7
-5:51
Sum: 1h55+5h51-(14+5+5+12=)36’ = 7h46-36’ =

1b) ACTIVITIES ➔ ACHE = PEM (Post exertional malaise): TT impossible , moving hardly possible ➔ 50%/5 , talking ➔ 80%/5 . White lips60-100? ()
1c) REST/STIFFNESS ➔ ACHE At night st2 → 80%/2 Getting up st2 → 80%/2 ,
Where stiffness, where Ache? Heavy muscles.

2) Histamine/MCAS symptoms

Nauseous sinus burning headache: Nope .
Tongue burning: Slight ().
Excitement - doc talk - she was very nice, it was just trying to make the problem clear of movement vs. meds, and she suggesting the influence of nocebo. But a similar talk later with the chief physician plus her in the background went well, and I think an important part was I was sitting on the floor, leaning, whilst in the first talk I was very uncomfortable standing. I think this contributed more than breaking the stress by approaching the hairy topic of movement vs. meds. The 2nd doc however didn’t suggest the role of nocebo, so I’m not sure if that contention made me tense and defensive.

JAB#3 (on Nov 7th 2022, updated Aug 11th 2023) HISTORY: Caused MCAS / histamine problems like the first 2. Esp. ENERGY DOWN further to (10-)15-20%. 20% is the new energy-"ceiling" since jab#3. Each jab -5%. Plus new symptoms Jan. (TCM) / Feb. (T4) / Mar. (CoV) DOWN to 8-12% by end of May (17 triggers, starting 20th). Better to ~18% from all this starting June 21st, but triggers regularly bringing it back down to ~10%, see Energy Exhaustibility (moved that there Aug 11th). Triggers: Foods (esp. soy, white beans, yeast spread, >1/2 banana), grasses slightly, Click for developments....

JAB#3 (on Nov 7th) → MCAS / histamine since end of Dec: 15-20% energy for under 45’, then white lips & pale face. But if I keep strain down to ‘half speed’ (70%) I can push on thru for hours - with a few breaks and lots of task-switching. Not that much specifically histaminey problems since end of Dec, occasionally sinuses and nausea, no more ill ache. Usually white lips & face 30%, and some sliding instead of walking indoors 10%, bit more cold intolerance 30% (long johns 24/7, 2 thick duvets at night). From Jan on, bit warmer (5-12° C), I’ve swapped long johns for a 2nd pair of pyjama trousers at night and when I’m pretty active at daytime sometimes no long johns, but when out slow cycling/walking. And don’t need hot water bottles any more, whether I can manage a cold shower (usually) or not.
Development summarized (important reminder): Down: Nov 17th - Dec 1st, worst 17th-18th, best 20th & 29th. Up: Dec 2nd-6th, Down 7th-8th, Up: 9th-14th, best 13th-14th: Winning easily 4:0, and slow energy for 4h! Down: 15th-21st 7 days, Up 22nd to 24th winning roughly 3:1, Unsure: 25th-31st: TT 2:2 or no play possible: 25th 2:2(?), (26th 0), 27th: 2:2, (28th 0 - ordered supps, not cellar), Down: 1st-2nd, 4th. Up: 3rd, 5th. Both: 6th-11th - sinuses, tongue, lips, runny, DAO helping. Cold: 12th. 13th: GI: HP supps? 14th: B3-Flushing up!? 15th: Runny nose, 16th-21st & 25th-26th…: Tongue off and on. 23rd-25th: Sore buttock (& leg) muscles like after the jabs since 23rd. 26th: Cold, pain & fatigue, energy from 18% to 10% since 19th. 27th: Bad. 28th: Bad to better. 29th: OK, considering. 30th: Foods slightly histamine-y. 31st: Still no appetite. From Feb 3rd on: 10% energy. Cold tolerance good, just not my fingertips. 8th: Bit of tongue after red beans, but OK. Feb 12th 6:00: Stronger histamine-y symptoms and stomach pang. Feb 15th: strong headache evening and night probably from red beans without DAO, praps also the sinus burning. Feb 18th: More energy for the first time. Very red lips, looking inflamed, go white when I press them together. From Feb 19th on: back down to 10% energy, everything else fairly OK, incl. at night, incl. cold tolerance, incl. fingertips, but lips’d be white if they weren’t chapped and inflamed. Feb 24th: Energy up to 14% due to specks of T4. Feb 26th: sinuses upon waking up 9:20… Energy up to 20% from T4. Mar 10th evening: Virus Ache of 5-7, underlying energy seems unchanged 20%. Mar 12th: all Ache und pains decreasing, urge better until I move, but no appetite, nauseous when I do something slightly strenuous, and dry coughing like mad a lot of the time. Mar 13th: Histaminey burnt tongue and feverishness after 1h intense ‘work’ phone call. Mar 16th: Still some histamine rests, but energy vs. histamine like before CoV, praps less stiffness, but less appetite. Mar 23rd still seemingly in the midst of a re-visit of the "CoV symptoms. Mar 24th still severest exhaustion with feverish ache despite energy, appetite increasing, bladder a bit better, cough not sure. Apr 4th: Found out that we’d got CoV from a person who hadn’t taken theirs seriously and hadn’t told us immediately that they had it: grrrrrrrr! Increasing GABA has stopped all bladder problems, but not yet all sinus burning. Apr 11th: CoV-cough and bladder seems to be recovering, T4-temperature/night sweats too, now appetite needs to recover weight… Awake at night 1h and tongue burning for >24h from banana and tuna. Apr 15th Histaminey sinus “cold” 21:00-24:00 after too much concentrated soy products. May 1st: strong histamine symptoms after 100g of washed white beans without DAO. But shows that the recent higher histamine symptoms after CoV have got better. May 16th: Soy yoghurt & yeast veg. spread without DAO. Try again with DAO! Effect: Wide awake at 4, needed extra vagal relaxation to continue sleep, woke up with sinuses and frontal headache for 20h, then also awake at 4/5 the morning of the 17th. Evening of 16th: 2 DAO, continuing that. May 28th: sneezing in the evening while being outside, looking up: grasses (usually only short / one day). May 29th: Only itchy nose, less in the countryside. and at the end: People stress end of May for a few weeks. Energy up from June 20th.

Treatments: Antihistamine, and extra GABA from Nov 29th. Stopping the antihistamine at the turn of the year quickly caused sleep problems. May 19th: Tried more yeast spread and some tofu with DAO before, but still got a strongly burning tongue, my sinus burning from talking too much didn’t get more. May 25th: Sinus headache in the morning, most probably cos of a whole banana in the evening without DAO before. Stopped antihistamine I think in April, cos of zombification, dry mouth and I think more, and sleep still good from everything else. Once for dentist June 23rd wouldn’t have been necessary.

3) Docs:

Aug 14th: Detailed heart echo (outside) confirmed blood pressure problems, nothing else. Radiologists still have to confirm 100% that there’s nothing dangerous around my brain (MRI+contrast). Strain of the nice doc talk bowled me for six, well: 4h. Then another doc talk with the chief, that went well, maybe because I was in a resting position, not standing like in the first talk. ENT vertigo exam was OK, till I tried to walk back and then had 3h of vertigo and nausea.

Last DOC update Aug 14th: heart echo, ENT, 2 doc talks: Slowly increasing blood pressure meds. Aug 11th: Still more scans & "interviews" in a normal ward. Aug 10th: Lots of bloods, scans (CT & MRI), "interviews" in the stroke unit. Aug 9th: Suspicion of stroke cos of severe vertigo, wonky gait, high blood pressure. Aug 7th: Bloods taken for uro/onco. Aug 1st: Phoned about the forgotten bloods. July 31st: Uro exam extremely painful, so forgot bloods - would have been tough anyway. Urine sample was no problem. The talk was disappointing in that he is nice, but definitely no oncologist, so it will still only be a pointer for cancer. July 26th: Phoned urologists/oncologists, the man at the reception was very friendly and asked helpful interested questions, I'm not used to that at all, and I got an appt. for next Monday, 31st, already, praps cos of the summer holidays. The urologist I'm assigned to has 3 reviews that sound promising, and "looks OK", young, interested and caring, like the reviews say. July 20th (added 25th): Got my onco labs at last: only eosinophilia visible to me (put the research on the 25th), GP has no idea, which warrants getting a "2nd" opinion, in absence of a 1st. July 13th: Unsuccessfully asked for my onco lab results. June 24th/25th: Teeth problems resolved for the time being. Waiting for onco report, “2nd” opinion or not? (“B symptoms” = night sweats, appetite, weight starting Feb/March resolved in June.) Click for details…

Click for details: Aug 14th: heart echo, ENT, 2 doc talks: Slowly increasing blood pressure meds. Aug 11th: Still more scans & "interviews" in a normal ward. Aug 10th: Lots of bloods, scans (CT & MRI), "interviews" in the stroke unit. Aug 9th: Suspicion of stroke cos of severe vertigo, wonky gait, high blood pressure. Aug 7th: Uro/onco-Bloods. Jul 31st. Uro/onco appt. June 23rd: New filling good (anithistamine druggy). June 13th: Gum inflammation down (to 20% from December), so keeping tooth, but renewing filling on the 23rd. May 24th-26th: Only my reports back, no appt. or further report. Apr 24th: Weird, 20' onco appointment, no feedback. Apr 20th: Bloods OK, except PSA: prostate too high = cancer check. Apr 9th: Night sweats have inside of 2 nights switched over to the opposite extreme: cold, needing full winter bedstuff & sore throat. Apr 6th: My gyn(!): mamilla OK now. Apr 3rd: surgeon says wait with mamilla swelling, Mar 30th: lung X-ray OK (cough), Mar 29th GP says possibly B-symptoms. Early March: Antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms. 3% of a T4 for thyroid Feb 24th till Mar 23rd: more energy, but lost appetite and weight. Feb-bloods: Ω3 needs increasing, much too low.

GP’s antifungal cream for my lips Feb 28th, then Mar 1st tea tree oil cream, helpful, but never quite gone. Repeat of antifungal cream stopped it.
3% of T4 Feb 23rd-Mar22nd: Day #4 bit more than the days before: Slower energy, histamine-y sinuses and frontal headache. Decreasing improved all that again.
Bloods Feb 7th: Most (like WBC, B2, phosphate and protein) are better, but still keeping those going, biotin and manganese too high.

4) Under control, attention necessary /():

Annoyances
Tea tree oil on onychia and fungus on my right foot. Improved.
Beau’s lines on thumbnails: Reduce washing , olive oil soap , moisturize /. 7/8mm healthier thumbnail now.
Gum inflammation: free , calendula .
( I never lose pee at night , but why?)

1) Symptoms well under control: GI (via elimination) - better today (✅) after 20ml of that juice mix yesterday caused some diarrhea, pee not perfect, but OK-ish (✅) (via GABA: ENOUGH. ✅), LOCAL PAINS (exercises, back: via using wall/door for support) ✅. Details...

except GI: stools loose0% , appetite , pee pain: 3p1-2 , lower back unrest .

2) Symptoms fairly under control - click for details on Weather: SUN / WIND ✅ (layering off and on all the time), THIRST (✅), dry mouth (day and) at night ❌. Last SEIZURES: Aug 9th: 2x. Aug 1st: 4-5x seizure-ish, so again GABA up, added 2x sublingual. July 25th seizure-ish 3-4x, so GABA up. July 17th: 2x. July 7th seizure-ish 4x. Jun 23rd 4x, Jun 16th, Jun 6th 2x ❌, May 25th 17:40 & 21:00, May 14th/13th, Apr 16th/15th, last ESOPHAGUS BLOCKS: Aug 8th, July 23rd & 16th, May 31st (all 3 cos distracted), before that Apr 4th ✅. JAW solved for the time being since June 23rd. ✅

Weather: Outdoors almost all day now, for energy/sleep from light and air - not too much pure sun, that’s all, but getting better used to it.
Dry mouth (day and) at night has always been a problem, a stronger added real thirst making me drink a fourth litre of almond milk a day came up in April. Stopping the antihistamine completely has praps helped stop it become painfully sticky at night, so I don’t use the gel much any more.
Last focal seizures: 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 seizur-ish 4x. 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: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. 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…
Jaw: Hardly & seldom pain since Nov. A bit more in Jan. Jan 6th: Slightly psychosomatic from memory of a painful time. Jan 10th: A bit after tooth cleaning. After: regularly a little bit, 1-2x/d. Better since improving tooth care again and giving that side of the jaw a rest from chewing for a few days from Feb on. May 18th (and about a week now, so let’s say from May 10th: 3 tooth problems, like often it seems from food stuck between teeth which I can’t get out. Trying sucking it out with liquid, either almond milk or calendula essence, but it’s stubborn as heck. Immediately improved when a broken filling was taken out May 22nd. June 6th: I think I need to get both teeth done, cos they’re causing a lot of problems that I can’t prevent any more… - June 23rd: OK, the fillings were enough, solved for the time being.

Treatments under control: SELF-TREATMENT & SUPPS optimal & stable, but necessary - Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Aug ~1st: pine bark again, + methylene blue + polysterols, Aug 5th Feverfew & PQQ again. July 25th (updated almost everything too): Increased eleuthero, decrease theanine to 2x0.1g and quercetin, added EGCG, all 4 in the B-supps. Next: Methylene blue! LDN! Creatine?

SELF-PHYSIO (click for details): OK, apart from back exercises, rectified that Tuesday morning tho. Wrists: more (✅), jaw-joint: to do (❌). Air + light + movement all day. ✅ Cold showering every day ✅.