JayCS’s Fibro Blog

JayCS · February 12, 2022, 3:04pm

2022-02-12, Saturday 20% - tomorrow is the day that shows where it’s going to - … today “OK”…

v1 16:00: still OK-ish, nipping each symptom by the bud …
However TT paining in the 4th game is worse than the last few days…

Triggers & resulting Symptoms

SLEEP (click for details): 8h40, up 5x (37') ✅, but ➔ Feeling 70-80% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐

No fw! lbu: belly tensing? No half-sitting on sofa! SUPPS & AIR 1st!
cold shower p2? Sleep 22:50-
0:02 3’ 80%/2 p0 st1 drink fw1’
1:14 3’ 70%/2 p0 st1 drink fw1’
3:10 11’ 70%/2 p0 st1 drink fw1’ nostrils: air, breath ex + acupressure. belly: chamomile tea, HWB.
5:43 13’ 70%/2 p0 st1 drink fw1’ slight headache: drink. Sinuses & skin burn (thighs) a bit: .1g GABA.
7:13 7’ 70%/2 p0 st1 drink fw1’ nostril: breath ex + acupressure. B2+3+4.
-8:07
Sum: 1h10+8h07-(3+3+11+13+7=)37’= 9h17-37= 8h40, up 5x (37’)

ACTIVITIES (aiming for 40% - well 20% - of pre-fibro) ➔ ACHE: ➔ 80%/2, resting, table tennis ➔ 90%/1 going up to 3 in the 4th game, neighbour had gotten a tree in our garden brought down without asking First it didn’t sink it when I saw it, but after, didn’t get worked up, more anguish/pain ➔ 60%/4, another breath-hold brought that back down a bit ➔ 70%/3. Repeat similar a few times a bit. Making music OK 80%/2, but too much singing & standing 70%/3, so breathing exercises.
"HOW DO I LOOK?" 8:10 white lips :20 tired eyes, white lips 9:38 white lips, eye bags: cream 13:10 redblue lips, eyes OK-ish 15:55 same
ACTIONS ➔ PAINS: Coccyx hurting due to the bound angle sitting, better from cross-legged, so need to try that more altho it’s much more painful.

Treatments

Docs: Re-check for alpha-fodrin autoantibodies next (slightly increased July 2020), Serum TPO-Antibodies (thyroid) (were greatly increased July 2020). Why is my glucose always increased?
WHB (3 rounds) 9:45 1’30’’ 2’ 2’ 1’30’’ 1’30’ 1’50’’ good! 1’10’’ 1’30’’ 1’30’’
RIBOSE:

SELF-PHYSIO (click for details): 3h41 ✅. Trying to increase combinations.

aloe vera 1’, facetime 5x1’, airing 4x2’, cold shower 1x(10’), cream fc/ey/hd/ft 8’, HWB 2x3’, breath exercises 2x3’, acupressure 2x3’, Timing, calendula/tea tree x1’, teeth 3x2’, hunchback-pillow 15’, hair/nails 3’, plantar/calf stretch 13’, twist-stretch 8’, neck 1+ 4’, left foot on/under right knee/cross-legged 2’ 17’ 14’ 12’, breath-hold 12’+12’ 11’, palpate 1’, belly 3’, back 8’, hand-exerciser 2’, yoga/stretching 4’, neck 2 2’, marionette-hang 6’, loins 2’,

Combinations
jolt-jump 1’, workout 7’, massage gun 20’, shaking dance 1’, bent leg fall 1’, AuTr 20’,
: foot bath 15’, gums 2x30’’, V ‘, mirror 2’, RR x2’, temperature 5’, nux vomica 1’.

Supps (Feb 12th: 31): Supp costs: ~344€/m, reduced by reducing CoQ10 & stopping Sr. Plus starting up vit. C., minus a few I'm now re-ordering which I haven't subtracted. CHANGE: NAC at "21:00", to help induce sleep, and vit. C at morning meal, for less stomach trouble. ALA (and pine bark when it comes): later, before getting up, as it increases alertness. Choosing CoQ10/ubiquinone instead of ubiquinol and keeping under 150mg/d because the studies show that's better for lp(a), and for now reducing the ubiquinol dose to 1/day as it's the more potent form. My honokiol isn't that good a product, contains stearate rice powder & gelatine, need to improve that, if possible (may not be), same goes for rhodiola: maltodextrine & stearate. Starting arginine soon. Magnesium malate is sposed to be good for waking, glycinate for sleeping. The latter isn't true for me I don't think. But I'll stop the malate in the evenings now (19:00). RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Nd, Arg, B3, Rib, Pe, Ps, Se, 0 Sr 0x31125k. (REGULAR as of Feb 12th (31, except I need new Mg Gly, Pf, pine bark, Zn & will be starting Ar soon): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 2250mg, Mg (Mal) 1245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Jan 20th (before: see the reference post)
/20:00 without Cr A1/2 “19:00” PF#1 Cr#1 mal#1+2 P5P/2Rho(0Se) PQQ Ω3 + 0Immun. DRINK! DAO! & Qc (slp! GI?)
/21:45 without Pf#2 A3 “21:00” PF#2 .6 GABA&.6glu#1 & Lut (slp!) & Qc (slp! GI?) (+1NAC)
/00:00 Chamomile tea.
/00:05 without Pf#3 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid
/01:15 B1 “01:00” PF#4 0SRP#1
/07:15 !B2 “07:00” +ALA+2x pine bark, (teeth)
/07:15 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/07:15 B4 “07:00” EGCg + Fev/MSM
/09:00? MEAL! C1/2 “+30’=Meal” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn (0NAC) 1xHONOKIOL! DRINK! DAO! + 1 vit. C.
/09:00? Rupafin & C3 “08:00” 0x.5gC#1 2The2 (0NAC), taking Qc#2 to 19:00
/13:30 C4 “11:00” (+2h/) gi#2 gly#1+2 0SRP#2. Nd#? & Ellagic acid
0 14:00 DAO (D1) “13:00” 0psyllium deliberately tried without, as mainly veg.
/15:00 D2/3 “15:00” 0x.5gC#2,Cr#3,!.6GA#4/0glu#3,gink#3,gly#3+4, 0NAC#5 DRINK! Taking Qc#3 to 21:00
/16:25 vit.D3
→ D4 “17:00” (“meal/acids+2h”) Nd#?.Qc#4.Q10#2.Rs#2, 0SRP#3.
eve:
“18:00” Prepare: 1) Complete & C changed supps. 3) Complete ##. 4) Tally irreg. 5) Remove “v” 6) Cut template 7) Save this 8) Paste 1x & unhide & paste 2nd (+1 to date and ##). BATCHES OK? Close 2nd TAB!
(Nov 4th: 18:00 vitamin B12 5mg methylcobalamin s.c.; next: Jan 4th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? Pf: A1+0A3+0A4+B1, B2:A1+C2 0x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, 0Gi: C2,C4,D3 0x2Gly3x2Mal: C4+D3, A2 Qc: A2.A3.B3.D4 (not C3.D2) Rs:B3,D4 Sr0x: B1,0C4,0D4. SINGLE: A2:P5/Ro/0Immun., A3:+NAC! B2: ALA+0x2! pine A3: Luteolin, B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:Zn&Hon&C C3:2Th+Rupafin (A2:Ω/Pq:meal) DAO before every meal.
(0x2C:C2,D3) (A2:0Se), (B2:0mu), (B4: 5NADH if nec.) (D1:0Pe). (0 Nia+) (0Nc: A3, B1,C1,C3,D2)

Development
Jab-sfx/MCAS/antihistamine: Specks of GABA sublingually for sinuses!?
Dry mouth/lips/thirst will be the antihistamine, as praps any headache, also better sleep. Actually somnolence & fatigue aren’t worse than before the antihistamine. And its still helping better sleep. However the pain today at TT is like before the antihistamine, but evenings quite good, considering standing and making music for 1.5h after freezing on a 45’ slow cycle-walk.

Research-search today:

Lessons in self-care #221 Brilliant quick reaction breath-holding after the rage about the sawn off tree, I think that helped my wife too to realize that we need to channel our anger, but not let it get to our health. Have to watch out for sleep tonight, it’ll probably come up then again, even tho that won’t change much, as we have already planned several apt consequences & modes of action.
Reasons to be cheerful #228 A sunny day again at last!

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 12, 2022, 7:23pm

2022-02-13, Sunday 20% “+10% cortisol” - Lots of music and antihistamine details

v2 12:00 ‘researched’ interesting details on my antihistamine

Triggers & resulting Symptoms

SLEEP (click for details): 8h55, up 6x (48') ✅ ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐, but feeling cold, so interesting to shed light on/examine body temperature, see 'research'.

No fw! lbu: belly tensing? No half-sitting on sofa! SUPPS & AIR 1st!
cold shower p0 Sleep 22:45-
0:15 5’ 80%/2 p0 st1 drink fw2’ air A4
1:50 3’ 80%/2 p0 st1 drink fw1’ air B1
3:33 3’ 80%/2 p0 st1 drink fw1’ air Mind making music, otherwise tired, so nidra to detract.
4:38 10’ 80%/2 p0 st1 drink fw12’ fw, altho y.nidra helped, cos I feel sort of heated up (glycine helps sleep by lowering body termperature….)
4:59 15’ FCS#2 instead, cos too many ideas in my head. Chamomile & soy milk for stomach burning.
7:35 12’ 80%/2 p0 st1 drink fw4’ cold, white lips, facetime: air, HWB B2+B3+B4
-8:28
Sum: 1h15+8h28-(5+3+3+10+15+12=)48’ = 9h43-48’ = 8h55, up 6x (48’)

ACTIVITIES (aiming for 40% - well 20% - of pre-fibro) ➔ ACHE: Lot of music: production, practicing, as well as a short gig, also (partly very loudly) discussing the sawn off tree with 3 neighbours ➔ 60-70-80%/3-4. Let’s see how I fare afterwards.
(e.g. cycle , TT = , meetings/social , mask , kids , work ➔ ?80%/2) ?
"HOW DO I LOOK?" 16:35 (same all day) face medium
ACTIONS ➔ PAINS:
(e.g. lie, stand, loins, sit, arms up, neck, stiff, walk, cycle, 0xp1-2, GI, talk, mask.)

Treatments

Docs: Re-check for alpha-fodrin autoantibodies next (slightly increased July 2020), Serum TPO-Antibodies (thyroid) (were greatly increased July 2020). Why is my glucose always increased?
WHB (3 rounds) 20:35 standing!, slightly shorter… 11:55 1’30’’ 1’40’’ 17:00 1’30’’ 1’50’’ 1’40’’
RIBOSE: 17:15, pimping for the gig…

SELF-PHYSIO (click for details): 3h24 and more ✅. More combinations.

teeth 2x2’, back 5’+8’, jolt-jump 2’, bent leg fall 1’, marionette-hang 8’, airing 5x2’, HWB 2x3’, neck 1+ 4’, cold shower 2x(10’), breath exercises 4’, Timing, hunchback-pillow 15’, AuTr 20’, horse stance 4x1’, facetime 4x1’, cream fc/ey/hd/ft 1x2’, left foot on/under right knee/cross-legged 10’+15’+12’, palpate 1’, belly 3’, neck 2 2’, twist-stretch 3’, plantar/calf stretch 2’, loins 2’, breath-hold 10’+14’+13’,
Combinations
calendula/tea tree x1’, hair/nails 3’, yoga/stretching 5’, workout 7’, hand-exerciser 3’, massage gun 20’, shaking dance 1’, acupressure 6’, aloe vera 1’,
: foot bath 15’, gums 2x30’’, V ‘, mirror 2’, RR x2’, temperature 5’, nux vomica 1’.

Supps (Feb 12th: 31): Supp costs: ~344€/m, reduced by reducing CoQ10 & stopping Sr. Plus starting up vit. C., minus a few I'm now re-ordering which I haven't subtracted. CHANGE: NAC at "21:00", to help induce sleep, and vit. C at morning meal, for less stomach trouble. ALA (and pine bark when it comes): later, before getting up, as it increases alertness. Choosing CoQ10/ubiquinone instead of ubiquinol and keeping under 150mg/d because the studies show that's better for lp(a), and for now reducing the ubiquinol dose to 1/day as it's the more potent form. My honokiol isn't that good a product, contains stearate rice powder & gelatine, need to improve that, if possible (may not be), same goes for rhodiola: maltodextrine & stearate. Starting arginine soon. Magnesium malate is sposed to be good for waking, glycinate for sleeping. The latter isn't true for me I don't think. But I'll stop the malate in the evenings now (19:00). RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Nd, Arg, B3, Rib, Pe, Ps, Se, 0 Sr 0x31125k. (REGULAR as of Feb 12th (31, except I need new Mg Gly, Pf, pine bark, Zn & will be starting Ar soon): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 2250mg, Mg (Mal) 1245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Jan 20th (before: see the reference post)
/20:55 “19:00” 0PF#1 Cr#1 mal#1+2 P5P/2Rho(0Se) PQQ Ω3 + 0Immun. DRINK! DAO! & Qc (slp! GI?)
/22:05 without Pf#2 A3 “21:00” 0PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc (slp! GI?)(+1NAC)
Chamomile tea.
/00:15 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid, +Qc!
/01:50 Chamomile 0B1 “01:00” 0PF#4 0SRP#1
/07:40 !B2 “07:00” +ALA+2x pine bark, (teeth)
/07:40 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/07:40 B4 “07:00” EGCg + Fev/MSM
/?09:00 MEAL! C1/2 “+30’=Meal” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn (0NAC) 1xHONOKIOL! DRINK! DAO! + 1 vit. C.
/09:00? Rupafin & C3 “08:00” 0x.5gC#1 2The2 (0NAC), taking Qc#2 to 19:00
/ 14:05 only Ell: C4 “11:00” (+2h/) gi#2 gly#1+2 0SRP#2. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
/16:45 D2/3 “15:00” 0x.5gC#2,Cr#3,!.6GA#4/0glu#3,gink#3,gly#3+4, 0NAC#5 DRINK! Taking Qc#3 to 21:00
/20:40 D4 “17:00” (“meal/acids+2h”) Nd#?.Qc#4.Q10#2.Rs#2, 0SRP#3.
eve:
“18:00” Prepare: 1) Complete & C changed supps. 3) Complete ##. 4) Tally irreg. 5) Remove “v” 6) Cut template 7) Save this 8) Paste 1x & unhide & paste 2nd (+1 to date and ##). BATCHES OK? Close 2nd TAB!
(Nov 4th: 18:00 vitamin B12 5mg methylcobalamin s.c.; next: Jan 4th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? Pf: A1+3+4+B1, B2:A1+C2 0x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, Gi: C2,C4,D3 0x2Gly2x2Mal: C4+D3, 0!!A2 Qc: A2.A3.B3.D4 (not C3.D2) Rs:B3,D4 Sr0x: B1,0C4,0D4. SINGLE: A2:P5/Ro/0Immun.+NAC! A3: Luteolin B2: ALA+0x2! pine+NAC#2! B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily+VitC! C2:Zn&Hon&C C3:2Th+Rupafin (A2:Ω/Pq:meal) DAO before every meal.
(0x2C:C2,D3) (A2:0Se), (B2:0mu), (B4: 5NADH if nec.) (D1:0Pe). (0 Nia+) (0Nc: A3, B1,C1,C3,D2)

Development
Jab-sfx/MCAS/antihistamine: Hardly any, just pain from overdoing it. Cortisol probably high. Sinuses starting up due to procrastinating supps (well actually forum posting) in the evening after all the music making.

Research-search today:
3g glycine at night is sposed to help sleep by lowering the core body temperature… - altho I feel magnesium glycinate wakes me up…
BTW I’ve been using magnesium malate at night and glycinate in the daytime cos I feel magnesium glycinate wakes me up, but here it says the opposite several times - can I be that different or was I attributing things wrongly:

Click here for interesting details on my helpful 2nd gen. antihistamine rupatadine ('Rupafin'), esp: good for nasal problems, even better at 20mg, but then praps more sfx; try evenings for sleep & nostrils/sinuses at night, less tiredness. Praps responsible for my dry mouth, thirst, IBSD, while PEM, skin, sinuses sleep are a bit better already. It's anti-inflammatory (incl. cytokines), watch out for increase in CPK & weight, and grapefruit increases too much. 1st gen. are better for nose, but more sfx. Contains stearate.

I asked my allergologist and she prescribed rupatadine (2003; e.g. ‘Rupafin’ in my case). That like cetirizine (1987; e.g. ‘Zyrtec’) and ketotifen (1976; e.g. ‘Zaditor’, also mast cell stabilizer) is a 2nd gen. antihistamine, but newer. According to her and my GP only 2nd gen. ones don’t make you that tired (non-sedating), usually, and that’s also the case for me. Somnolence, headache & fatigue were typical side effects I was watching out for, but not even that happened much - a bit tired. Praps an IBSD problem sometimes (but that may’ve been changes in my supps). Two positive effects were less PEM = post-exertional malaise, pain after activity; and better sleep, altho I’m taking them in the mornings. As my sinuses act up and at night my nostrils, it’s helpful that rupatadine seems the best antihistamine for nasal problems incl. rhinitis etc., as well as urticaria for my skin burning and itching. These have got better since, except the congested nostrils in the 2nd half of the night. I’d been using added GABA (.1g) as that had helped my sinuses every time I added it and they kept acting up a time after my last normal GABA dose (for fibro-symptoms). And I’ve noticed skin burning is more reduced to my flanks (lower back).

What I have to watch out for due to my high lipids is that rupatadine is metabolized via the isoenzyme CYP3A4, which is also where statins are metabolized (says wikipedia; only some, it says here: Rupatadine 10mg Tablets - Summary of Product Characteristics (SmPC) - (emc))

Pharmacokinetics, Safety and Cognitive Function Profile of Rupatadine 10, 20 and 40 mg in Healthy Japanese Subjects: A Randomised Placebo-Controlled Trial = Pharmacokinetics, Safety and Cognitive Function Profile of Rupatadine 10, 20 and 40 mg in Healthy Japanese Subjects: A Randomised Placebo-Controlled Trial - PubMed (2016, Japan)

These studies from 2019 Clinically relevant effect of rupatadine 20 mg and 10 mg in seasonal allergic rhinitis: a pooled responder analysis - PubMed and 2020 Higher efficacy of rupatadine 20 mg and 10 mg versus placebo in patients with perennial allergic rhinitis: a pooled responder analysis - PubMed suggest I could improve the nostrils by increasing 10mg to 20mg. However the increase could also tire/slow.

Instead I’m wondering if like you’ve suggested my sleep as well as nostrils & sinuses and night would benefit from taking it in the evenings. My allergologist suggested trying half in the evening and half in the morning first, but she’s prescribed 1-0-0-0.

It’s absorbed inside of an hour. Food may delay uptake by an hour, but that has no clinical relevance. “The mean elimination half-life of rupatadine in elderly and young volunteers was 8.7 hours and 5.9 hours respectively.” (not clinically significant.) No suggestion when to take it here. https://www.medicines.org.uk/emc/product/2501/smpc.

But here in 2011 it says it doesn’t matter as it works 24/7, however it is often given at bedtime: https://pdfs.semanticscholar.org/70bb/7e9f100ad3afd2aa2a7821692bb2c686bac5.pdf
= Morning and evening efficacy evaluation of rupatadine (10 and 20 mg), compared with cetirizine 10 mg in perennial allergic rhinitis: a randomized, double-blind, placebo-controlled trial

They found out that it worked so well 24/7 that it didn’t make a difference, altho expected to. However I get the feeling that another reason is that if you take it directly in the mornings then that will decrease the nasal problems, whereas mine begin 4-6h before I take it. Also I can’t find anywhere that it’s a problem taking it in the evenings or at night. Also interesting: Increasing rupatadine to 20mg slightly improved nasal itching & obstruction, sneezing and conjunctival itching, but not rhinorrhea in comparison to 10mg, whilst cetirizine 10mg was better than rupatadine 10mg for nasal itching & obstruction, but not for sneezing or conjunctival itching. So for my nasal obstruction, rupatadine 20mg might be by far best. Strange that I can find nothing about burning sinuses anywhere. “The specific mechanisms underlying the chronobiology of AR are speculative; however several factors might contribute to the occurrence of maximum nasal congestion: sneezing rhinorrhea in the morning; secretions increase and accumulate overnight; there is continuous allergen exposure to mold, mites, or house dander; cortisol levels are lowest at night, and hence inflammatory mediators might be at high levels; and autonomic nervous system activity at night promotes vagal tone, favoring vasodilation.” That might explain why airing, GABA and cold showering help me. “First-generation H1 antihistamines effectively reduce AR symptoms but worsen daytime somnolence, decrease reaction time, and impair performance. Older antihistamines also worsen sleep architecture and disrupt the normal sleep process, and therefore the patients wake up feeling unrested." "somnolence is reported in a small minority of patients, which means second-generation antihistamines are nonsedating compared with first-generation ones.” “The increase in the incidence of sleepiness, as a treatment-related adverse event, could be associated with the administration of the drug in the morning. The time of drug administration in our study differs from that of other similar trials carried out with other recent second-generation antihistamines, in which the drug in usually taken at bedtime.”

“The most common adverse reactions in controlled clinical studies were somnolence (9.4%), headache (6.9%),fatigue (3.1%), asthenia (1.5%), dry mouth (1.2%) and dizziness (1.03%).” Rupatadine 10mg Tablets - Summary of Product Characteristics (SmPC) - (emc). Of all the adverse effects quoted there, I have - surprisingly - had abdominal pain (upper), diarrhea, asthenia = dry mouth, thirst, I also have to watch out that my CPK and weight don’t increase.

In high concentrations in vitro they inhibited mast cell degranulation and cytokines, something I’d want (if it’s the inflammatory cytokines).

Don’t take together with grapefruit juice. https://www.medicines.org.uk/emc/product/2501/smpc
Here tho it says that’s because that increases rupatadine levels: “This may increase the level
of Rupatadine in your body.” https://medex.com.bd/index.php/attachments/kAhk6MN7pXjzqe3quhA2QiepV6W49J/rupatadine-fumarate-tablet-prescribing-information

As I’m looking into additives in supps, cos of the MCAS, it’s interesting to note that the pill contains maize starch, cellulose red & yellow iron oxide, lactose monohydrate and magnesium stearate, most of which I don’t want to take in supps any more… And lactose might be a problem for people with lactose intolerance… But that’s what it says in the product leaflet https://medex.com.bd/index.php/attachments/kAhk6MN7pXjzqe3quhA2QiepV6W49J/rupatadine-fumarate-tablet-prescribing-information

“Rupatadine has a dual anti inflammatory effect by blocking both histamine H1 and PAF receptors.” Rupatadine Uses, Dosage, Side Effects, FAQ - MedicinesFAQ

Cold showers before bed: Great, but warm might be better for congestion.

One hour before sleep. Decrease inflammations, removes toxins like lactic acid as body warms up The Many Benefits of Taking Cold Showers
Better 60-90’ before sleep, so fight or flight reaction is thru. Reduces core body temperature by 1-2°. https://www.hackbiohacking.com/benefits-of-a-cold-shower/
The technique, which involves cooling down the pre-frontal cortex using a plastic cap covered with water circulating tubes, seeks to slow down the metabolism in the frontal cortex and counterbalance the increased metabolism in this part of the brain associated with insomnia. https://valleysleepcenter.com/coldshower/
Reduces inflammation or swelling, relaxes muscles, helps lower cortisol, regulate blood pressure, better blood circulation. But a hot shower fights nasal congestion! and gives you instant relief! When we take a cold shower, then it speeds up the process of lowering down the body temperature. A cold shower before bed activates the sympathetic nervous system, which causes more production of noradrenaline and beta-endorphins in our brain.
These chemicals are natural antidepressants, which makes you feel relaxed and happy. https://www.healthpector.com/does-a-cold-shower-before-bed-help-you-sleep/

Lessons in self-care #222 Overdoing it was good. Breath-holding to balance the neighbour discussions worked.
Reasons to be cheerful #229 Music making was fun!

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 14, 2022, 4:08pm

2022-02-14, Monday - 10% better sleep, but not particularly good, night or day.

v2 19:15 Not doing much, not able to: that’s OK.
v1 17:05 antihistamine at night - better sleep, but didn’t feel good, histaminey symptoms, and slow start (which all might’ve been the deliberate overdoing it).

Triggers & resulting Symptoms

SLEEP (click for details): 8h31, up 4x (18') ✅, but ➔ Feeling 70% well, Ache 2 of 7 🧐, getting up: 70%/3 ❌ Rupafin decreased sleep breaks, but still cold, 3h of nostrils & sinuses. Maybe a short warm/alternate shower in that case? (Made it worse at 9:00 tho)

No fw! lbu: belly tensing? No half-sitting on sofa! SUPPS & AIR 1st!
cold shower p0 Sleep 23:00-
0:30 5’ 80%/2 p0 st1 drink fw2’ HWB B4+A1 = Rupafin
2:15 5’ 70%/2 p0 st1 drink fw2’ Cold.
5:15 5’ 70%/2 p0 st1 drink fw2’ Cold. nostrils & a bit sinuses.
6:40 3’ 70%/2 p0 st1 drink fw2’ nostrils & a bit sinuses/fore-headache, like a cold (rupafin-change?)
/6:45 “7:00” Heating on!
-7:49 70%/2 p0 st1 drink fw2’ still burning sinuses, but nostrils free, slightly burnt tongue B1+B2+B3
Sum: 1h+7h49-(5+5+5+3=)18’ = 8h49-18’ = 8h31, up 4x (18’)

ACTIVITIES (aiming for 40% - well 20% - of pre-fibro) ➔ ACHE: Had to break off phoning at 9:00 ➔ 60%/3, alternate shower made it worse ➔ 50%/3, breath-holding better ➔ 70%/2, resting - histamine, producing music ➔ 70-80%/2. Eating & playing cards ➔ 70%/3. Short 10’ walk. 70%/2. Low profile today. No table tennis.
"HOW DO I LOOK?" 09:05 white lips 09:20 white lips
ACTIONS ➔ PAINS: Yup - strangely that’s all good.

Treatments

Docs: Re-check for alpha-fodrin autoantibodies next (slightly increased July 2020), Serum TPO-Antibodies (thyroid) (were greatly increased July 2020). Why is my glucose always increased?
WHB (3 rounds) 9:20-9:33 1’20’’ 1’40’’ 1’40’’ Better. 19:50
RIBOSE: ?

SELF-PHYSIO (click for details): 2h14 ✅. More combinations. Sometimes it's tedious to write everything down, esp. cos I know I don't catch everything I do anyway. OTOH I sometimes not a bit more minutes and it's not just a case of the amount, it's more a reminder of the 34 different types of exercise I can do (with 'yoga alone already being >20 possible exercises)

teeth 2x2’, cream fc/ey/hd/ft 2x1’, airing 6x2’, cold shower (10’)+5’, acupressure 4’, facetime 3x1’, HWB 3x3’, hunchback-pillow 8’, breath-hold 13’+11’, temperature 5’, horse stance 2’, left foot on/under right knee/cross-legged 36’, plantar/calf stretch 7’, hand-exerciser 2’, aloe vera 1’.
Combinations

calendula/tea tree x1’, breath exercises 4’, Timing,AuTr 20’, palpate 1’, belly 3’, back 12’, hair/nails 3’, neck 1+ 2’, neck 2 4’, twist-stretch 5’, loins 5’, yoga/stretching 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, massage gun 20’, shaking dance 1’, bent leg fall 1’,
: foot bath 15’, gums 2x30’’, V ‘, mirror 2’, RR x2’, nux vomica 1’.

Supps (Feb 12th: 31): Supp costs: ~344€/m, reduced by reducing CoQ10 & stopping Sr. The next expensive ones are PQQ, omega 3, DAO, and luteolin, all nec. Plus starting up vit. C., minus a few I'm now re-ordering which I haven't subtracted. CHANGE: NAC at "21:00", to help induce sleep, and vit. C at morning meal, for less stomach trouble. ALA (and pine bark when it comes): later, before getting up, as it increases alertness. Choosing CoQ10/ubiquinone instead of ubiquinol and keeping under 150mg/d because the studies show that's better for lp(a), and for now reducing the ubiquinol dose to 1/day as it's the more potent form. My honokiol isn't that good a product, contains stearate rice powder & gelatine, need to improve that, if possible (may not be), same goes for rhodiola: maltodextrine & stearate. Starting arginine soon. Magnesium malate is sposed to be good for waking, glycinate for sleeping. The latter isn't true for me I don't think. But I'll stop the malate in the evenings now (19:00). RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Nd, Arg, B3, Rib, Pe, Ps, Se, 0 Sr 0x31125k. (REGULAR as of Feb 12th (31, except I need new Mg Gly, Pf, pine bark, Zn & will be starting Ar soon): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 2250mg, Mg (Mal) 1245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Jan 20th (before: see the reference post)
/21:55 “19:00” 0PF#1 0Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 + 0Immun. DRINK! DAO! & Qc (slp! GI?)
/22:40 without 0Pf#2 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc (slp! GI?)(+1NAC)
/0:30 Chamomile tea.
/0:30 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid,
/0:30 B1 “01:00” 0PF#4 0SRP#1 + Rupafin
Heating on!
/07:50 !B2 “07:00” +ALA+2x pine bark, (teeth)
/07:50 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/07:50 B4 “07:00” EGCg + Fev/MSM
/08:30 MEAL! C1/2 “+30’=Meal” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn (0NAC) 1xHONOKIOL! DRINK! DAO! + 1 vit. C.
Rupafin & C3 “08:00” 0x.5gC#1 2The2 (0NAC), taking Qc#2 to 19:00
/09:05 C4 “11:00” (+2h/) gi#2 gly#1+2 0SRP#2. Nd#? & Ellagic acid
1 DAO (D1) “13:00” 0psyllium
/15:00 D2/3 “15:00” 1x.5gC#2,0Cr#3,.6GA#4,gink#3,gly#3+4, 0NAC#5 DRINK! Taking Qc#3 to 21:00
/17:10 D4 “17:00” (“meal/acids+2h”) Nd#?.Qc#4.Rs#2, 0SRP#3.
eve:
“18:00” Prepare: 1) Complete & C changed supps. 3) Complete ##. 4) Tally irreg. 5) Remove “v” 6) Cut template 7) Save this 8) Paste 1x & unhide & paste 2nd (+1 to date and ##). BATCHES OK? Close 2nd TAB!
(Nov 4th: 18:00 vitamin B12 5mg methylcobalamin s.c.; next: Jan 4th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? Pf: A1+3+4+B1, B2:A1+C2 0x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3, 0!!A2 Qc: A2.A3.B3.D4 Rs:B3,D4 Sr0x: B1,0C4,0D4. SINGLE: A2:P5/Ro/0Immun.+NAC! A3: Luteolin, B2: ALA+0x2! pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily+VitC! C2:Zn&Hon C3:2Th+Rup (A2:Ω/Pq:meal) DAO before every meal.
(0x2C:C2,D3) (A2:0Se), (B2:0mu), (B4: 5NADH if nec.) (D1:0Pe). (0 Nia+) (0Nc: A3, B1,C1,C3,D2)

Development
Jab-sfx/MCAS/antihistamine: “Cold” night. nostrils & a bit sinuses/fore-headache, like a cold (rupafin-change?), at 7:00 still burning sinuses, but nostrils free, slightly burnt tongue.
9:20 Showering & breath-holding: burning skin. 10:20 burning face skin. 10:50 Temperature is back up to 36,5°C. 11:55 That’s a new one: I started getting stomach burn & nausea when my wife started hoovering, and that’s not the first time, so aside from loving music, I have become more noise intolerant.
There’s too much dander near my bed, praps need to try getting that down for my nostrils, altho I remember I’d tried that once and it didn’t help.

Research-search today:

Looking at the study about low histamine diets 2021 again, it seems research can not yet calculate how much a certain food is going to affect histamine, so all opinions, including those of doctors, are probably based on more individual experiences or from absolute percentages of histamine, while they are not stating which it is. So I'll now eat more freely and concentrate on getting symptoms down with the med, supps etc.

abstract: Low-Histamine Diets: Is the Exclusion of Foods Justified by Their Histamine Content? - PubMed
article: Low-Histamine Diets: Is the Exclusion of Foods Justified by Their Histamine Content?
the effect of the histamine in foods may depend on diet, but also on histamine-liberating amines, dampening putrescine, and research has hardly any criteria yet to measure the whole load with its plus and minus in a certain diet or even food, and what more it is controversial how low histamine is low: 50mg/kg or 1mg/kg?!
Only “The exclusion of 32% of foods could be explained by the occurrence of high contents of histamine.” The study’s title could be re-phrased as “Exclusion of Foods is not necessarily Justified by Their Histamine Content”.
This does refer me to my own trigger hunting, my experience with getting all my IBS & gastric acid triggers down to zero in the last years. Just that I now have to sort out which symptoms I need to watch. Fatigue/nausea would be the biggest problems, sinuses & nostrils 2nd.
My new orientation would be praps only to watch most what all studies agree upon, and that would be fermented foods, i.e. yoghurts, and nothing else…
Or even more generally: Try to eat mainly like I need to, even some fermented foods, carry on with the antihistamine (at least for a while) and most supps (despite their high cost) and to try to avoid reducing my food types even more?

Just doing a fuller test-‘research’ on my last question, pumpkin seeds:
Low: Are Pumpkin Seeds High In Histamine? | Diet, Supplements and cutting-edge tips for Histamine Intolerance (360 doesn’t mention them; their instagram poll says 76% low/24% high)
Low: https://www.histaminedoctor.com/low-histamine-nuts-and-seeds/ (but contain amines)
High: https://sa1s3.patientpop.com/assets/docs/86462.pdf Keith Halperin.
High: https://www.rebeccawood.com/health/diet-nutrition/histamine-sensitivity/
High: Janice Janeja says all (organic) raw nuts are OK, except pumpkin seeds… https://www.low-histamine.com/blog/cashews-and-histamine
Interesting also for me that histaminedoctor (Kristie Leong) says peanuts & hemp are low…

the “experts” greatly differ, and no opinion is based on any criterion, so I’m now longer seeing them as experts, once again we ourselves are the only expert (as you say CJlJ).

(A German video like my allergologist saying it’s OK to go (armed) for the jab with MCAS: Corona-Impfung trotz Mastozytose oder MCAS? - YouTube)
(A German video of a prof. touting “Heilerde” = sepiolate/medicinal clay for MCAS Histamin-Unverträglichkeit natürlich behandeln - ohne Diät. Prof. Martin Raithel gibt Rat - YouTube)

Lessons in self-care #223 Doesn’t seem as if diet should be my highest priority re. histamine.
Reasons to be cheerful #230 “Body-tuning” you could call all this - just I’m in a different category

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 15, 2022, 9:18am

2022-02-15, Tuesday - 15% = less than Saturday (not counting: Sunday overdoing it and Monday paying for it) and Friday, which were less than Thursday…

v2: 13:30 slightly exciting bloods…
v1: 9:00 The antihistamine worked well tonight - still without passiflora. Felt good and good start, except not full energy. 10:10 Whoops, just realized I’ve taken a 2nd antihistamine pill, got confused with changing from mornings to evenings. Well, now I can find out if 2x10mg if the pro/con-balance is better, like one study suggests…

Triggers & resulting Symptoms

SLEEP (click for details): 8h48, up 4x (32') ✅, and ➔ Feeling 90% well, Ache 1 of 7 ✅, getting up: 90%/2 ✅, well & active, despite some Ache then. Sinuses only slightly at the beginning of the night & hardly nostrils towards the morning. Stints: 2x1h30, 30', 2h15, 2h15. Does that mean I can stop passiflora now? Or see if they work together. Or add +1=2 NAC first.

No fw! lbu: belly tensing? No half-sitting on sofa! SUPPS & AIR 1st!
cold shower p0 Sleep 23:00- A4+B1=Rupafin.
1:25 5’ 90%/1 p0 st1 drink fw2’
2:55 17’ 90%/1 p0 st1 drink fw7’ air
3:35 5’ 90%/1 p1-2! st1 drink fw2’ air
5:55 5’ 90%/1 p0 st1 drink fw2’ elbow. NO NOSTRILS. Pretty good. Cold OK.
-8:20 bit of nostrils towards the end, but not uncomfy.
Sum: 1h+8h20-(5+17+5+5=)32’ = 9h20-32’ = 8h48, up 4x (32’)

ACTIVITIES (aiming for 40% - well 20% - of pre-fibro) ➔ ACHE: ➔ Housework 80%/3, but OK. Table tennis from the end of the 2nd game on: ➔ 85%/4. After rest/fw & breath-hold: ➔ 85%/2. 13:30 tired. Rest, music, short cycle-walk & shop was pretty much ➔ 70%/3.
"HOW DO I LOOK?" 9:00 look kaputt, so rest now 12:35 white-blue lips, palish face as ever, so rest again
ACTIONS ➔ PAINS: Bit of elbow once at night: stretches sufficed. pee pain 1-2 at 21:40 (before GABA) and 3:30, as well as 18:45 p1. GI: Big esophagus block at 15:30

Treatments

Docs:
Blood results:

Copper & anti-P (lupus??) not there yet.
Lipids sky high; but statins are a problem with antihistamines.
Thyroid OK except again MAK/TPO (a bit less than July 2020),
IgG4 still upper end, but no longer above it.
Other MCAS-bloods normal, but Factor VIII somewhat over the limit, bringing my score on the MCAS-questionnaire up to 24 (14’d suffice). Factor VIII might be an additional thrombosis risk for me, but aspirin like statins is also a problem with antihistamines (see ‘research’ below).
If I do have Anti-P, re-check alpha-fodrin for lupus (slightly increased July 2020).
Why increased glucose?: see research below: gut, genetics or is it chromium, should I check?

WHB (3 rounds) 9:30 1’30’’ 1’50’’ 2’10’’ (in) 1’30’’ 2’30’’ (out) 1’10’’ 2’, 2’
RIBOSE: 18:55 (should’ve tried it before cos of the fatigue)

SELF-PHYSIO (click for details): 2h46 ✅. More combinations. Temperature 36,!7°C

airing 4x2’, cream fc/ey/hd/ft 4x1’, HWB 2x3’, belly 1’, back 4’, plantar/calf stretch 3’, twist-stretch 12’, marionette-hang 1’, hand-exerciser 2’, aloe vera 1’, teeth 3x2’, breath exercises 3’, cold shower (10’), Timing, facetime 3x1’, hunchback-pillow 5’,
temperature 1x5’, hair/nails 15’, loins 2’, yoga/stretching 1’, breath-hold 19’+12’, left foot on/under right knee/cross-legged 20’+18’+5’.
Combinations
calendula/tea tree x1’, AuTr 20’, palpate 1’, neck 1+ 2’, neck 2 4’, jolt-jump 1’, workout 7’, shaking dance 1’, acupressure 6’, bent leg fall 1’, horse stance 1’.
: foot bath 15’, V ‘, massage gun 20’, mirror 2’, RR x2’, nux vomica 1’.

10:10 Whoops , just realized I’ve taken a 2nd antihistamine pill, got confused with changing from mornings to evenings. Well, now I can find out if 2x10mg if the pro/con-balance is better, like one study suggests…

Supps (Feb 12th: 31): Supp costs: ~344€/m (halved CoQ10, no Sr, re-added vit. C.+NAC; minus re-ordering some). CHANGE: ALA & pine: later(?) - increases alertness; but praps more for burning mouth? CoQ10/ubiquinone <150mg/d better for lp(a). Look for better honokiol & rhodiola. Starting arginine soon for lipids. Magnesium malate good for waking(?), so stopping evenings. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, 0 Sr 0x31125k.
(REGULAR as of Feb 12th (31, except I need new Mg Gly, Pf, pine bark, Zn & will be starting Ar soon): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Jan 20th (before: see the reference post)
/20:00 A1/2 “19:00” 0PF#1 0Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/21:45 A3 “21:00” 0PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +1NAC
/ Chamomile tea.
/23:00 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid
/23:00 B1 “01:00” 0PF#4 0SRP#1 + Rupafin
Heating on! Warm shower?
/8:20 B2 “07:00” +ALA+2x pine bark, (teeth)
/8:20 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/8:20 B4 “07:00” EGCg + Fev/MSM
/10:10 MEAL! C1/2 “08:00” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn (0NAC) 1xHon! DAO?
/10:10 C3 “08:00” .5gC#1 2The2 (0NAC)
/12:50 C4 “11:00” (+2h/) gi#2 gly#1+2 0SRP#2. Nd#? & Ellagic acid
0 DAO (D1) “13:00” 0psyllium/
/16:35 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:20 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#? 0SRP#3.
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? (0)Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 0x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin+NAC B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th+Rup! (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development

Jab-sfx/MCAS/antihistamine: 21:40 Bladder acting up tells me it’s time for GABA. But why also at 3:30? Exhaustion-Ache most of the day, but short stints of energy, e.g. for the first game of table tennis (and won all 3 games). Praps worse after “midday meal” cos of its lateness, then the esophagus block; or from doubling the antihistamine today; of from overdoing it Sunday and down to 10% yesterday - if it’s not mid-term jab sfx then it should get better tomorrow, if it’s the jab: worse.

’Research’ today:

Schatzki-Ring: Recurrence does occur with rates up to 64% in the first 2 years, hence requiring repeat dilation. Schatzki Ring - StatPearls - NCBI Bookshelf
German woman with FM, then MCAS finds guaifenesin very helpful for FM
High blood sugar (glucose): exercise, carbs (sugar); gut, genetics, sugar, processed foods, grazing, dehydrated, chromium, magnesium, vit. D.. OK, so chromium would be the only thing I can influence: In this study from 2004 low chromium is connected to diabetes II, take as picolinate .2-1mg/d, it’s safe. It mentions insulin resistance, as does this Yale study from 2011 and also the results of a questionnaire of Dr. Berg which I did. The study from 2011 says chromium didn’t affect glucose, insulin or weight, but “it is possible that chromium deficient populations may respond to chromium supplementation.” (they didn’t check that) and “it is conceivable that a greater degree of insulin resistance may be required in order to detect a robust response to chromium”. So what is insulin resistance and how likely is it I tend to diabetes, something which has kept cropping up as a question for years: Quick wikipedia-looks show I have symptoms, but’d already be doing all I can aside from meds to keep it in check.
Dr. Berg’s questionnaire attributes these symptoms to insulin resistance: cold hands and feet, fatigue, high cholesterol, loss of vitality, urinary frequency, waking up at night. Also attributes these to low cortisol (normally lowest at 2:30): chronic pain, fibromyalgia, itching, legs heavy, sinus congestion, and high (normally highest at 8:00, but in adrenal fatigue: a spike): brain chatter at night, so he attributes the wonky rhythm to adrenal fatigue and mentions the role of cortisol in allergy reactions. (As he attributes fibro and itching to low bile (= gallbladder) (and low cortisol) I’m not taking his suggestions seriously, but as something to think about and ‘research’ further, it/he also supports taking vit. C against histamine).
A quick wikipedia-look at insulin resistance connects it to higher(?) cortisol & growth hormone, to inflammation/cytokines and to genes, and it seems to be the reason for diabetes II.
Alpha-fodrin: Sjögren’s AND lupus, so wait for the Anti-P result
Burning Mouth syndrome: possibly MCAS. Capsaicin blunts for some (my stomach can’t tolerate it tho). ALA helped in a tiny study, not reproducible, but I could try 2-3x.6g: Burning Mouth Articles by Susan E. Sklar, M.D. - Sklar Center
MCAS-symptoms in eyes/ears/nose/mouth, of which I have these quite a bit: dry eyes, unfocusing, noise sensitivity more, congestion, pain, burning mouth, dental decay (Ref: Afrin 2013). MCAS: Effects on eyes, ears, nose and mouth - Mast Attack
Factor VIII: Excess Factor VIII: A Common Cause of Hypercoagulability | American Board of Family Medicine (2005, 3 patients), in easy language, case and literature review 2019: “high factor VIII levels are an independent risk factor for thrombosis, with a greater impact on venous than on arterial thrombosis. To date, several genetic factors have been described for the variation in factor VIII levels, most importantly the ABO blood group that acts through vWF levels.”

Lessons in self-care #224 Gotta watch out, my activity is declining.
Reasons to be cheerful #231 Quite a bit of music production. Procrastinating with paper work.

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 16, 2022, 10:05am

2022-02-16, Wedneday - 15% - hurting, but happy and getting on.

v3 17:40: TT sort of 2 games, 3 games hurt a lot, but recovery time was quite OK. Lots of research to get my roughly 200 open tabs down which is slowing my laptop down a bit… (still procrastinating paper work)
v2 13:00: A few errands and I’m hurting - that seems more like 15%…:
10% I’d said for not being able to move at all much for nausea - it’s not quite that bad now, but the achey fatigue is a problem. Judging from table tennis yesterday, which won’t be better today (if it stops raining) I should say I’m at a quarter (2 games instead of 8) of pre-jab. As that was 40% that’d mean at 10%. Well praps I should call not being able to move much “5%”…
v1: 6:50 up from burning stomach once again: from what? 10:00 Continually prioritizing self-physio list may incite more. 11:00 good new groin exercises.

Triggers & resulting Symptoms

SLEEP (click for details): 7h37, up 5x (43') ✅, but ➔ Feeling 90% well, Ache 2 of 7 ✅, getting up: 80%/2 🧐, due to first brain chatter, then yoga nidra, then stomach burning ache.

No fw! lbu: belly tensing? No half-sitting on sofa! SUPPS & AIR 1st!
cold shower p0 Sleep 22:25-
23:35 5’ 90%/2 p1 st1 drink fw2’ A4 (with a Rupafin, didn’t I take one in A3 already??)
01:00 5’ 90%/2 p0 st1 drink fw2’ air
3:20 5’ 90%/2 p0 st1 drink fw2’ A4 a little unrest in between.
5:28 7’ 90%/2 p0 st1 drink fw4’ A4 good sleep, sinuses/nostrils free (a little clogged, picking/blowing helped), skin burning a little, bit of stomach burn, thermostat good, no HWB nec, but brain chatter/cortisol, so
6:05 21’ p0 st1 drink fw 20’ yoga nidra
-6:45
Sum: 1h35+6h45-(5+5+5+7+21=)43’ = 8h20-43’ = 7h37, up 5x (43’)

ACTIVITIES (aiming for 40% - well 20% - of pre-fibro) ➔ ACHE: 20’ music, rest, 30’ errands, rest, 20’ housework ➔ 80%/3 - sort of. 80% of 20% = 16% - altho it feels a bit less… TT 3 games, but hurt during 2nd & 3rd game wasn’t as abrupt as yesterday so harder to calculate ➔ 80%/3, and also it came down faster from fw/rest ➔ 80%/2
/
"HOW DO I LOOK?" Always pale/blue lips and tired eyes: 9:38 13:40 slightly redder (errands) 17:30 same
ACTIONS ➔ PAINS: . 8:30 backside hurts, but maybe just cross-legged too long. Or need to use massage pistol. Yep, helped GI: Big esophagus block at 15:30

Treatments

Docs:
Blood results:

Copper is at the low end, so I’ll supplement it.
Anti-P is negative, so I’ll re-check my old blood note.
Why is Factor VIII up? MCAS and CVD? Consequences? Cardiologist.
Why is glucose up?: Check chromium? (see research on Feb 15th)

WHB (3 rounds) 9:35 3x1’20’’ why so short-breathed today??
RIBOSE: 9:40 .3g cos of the “fatigue”.

SELF-PHYSIO (click for details): 3h12 ... ✅. More combinations. To incite more: List-prioritizing what I might feel like doing next. Temperature still "high" 36,7°C

aloe vera 1’, hand-exerciser 2’, belly 2’, back 12’+4’, left twist-stretch 5’, cold shower (10’), breath exercises 6’, Timing, hunchback-pillow 15’, AuTr 20’, facetime 2x1’, breath-hold 11’, foot on/under right knee/cross-legged 25’+13’, workout 7’, horse stance 1’, groin exercises 6’, jolt-jump 2x1’, teeth 1x2’, hair/nails 5’, airing 4x2’, cream fc/ey/hd/ft 7x1’, shaking dance 1’ (itchy skin!), temperature 5’, plantar/calf stretch 3’, loins 3’, bent leg fall 1’, massage gun 8’ for lower back pain,
Combinations
Next: marionette-hang 1’, acupressure 6’,
Good groin exercises: 2, 5 and 6 may be best for me: How to Relieve Groin Muscle Pain in 30 SECONDS - YouTube
HWB 3’, palpate 1’, neck 1+ 2’, neck 2 4’, yoga/stretching 5’,
calendula/tea tree x1’,
: foot bath 15’, gums 2x30’’, V ‘, mirror 2’, RR x2’, nux vomica 1’.

Supps (Feb 12th: 31): Supp costs: ~344€/m (halved CoQ10, no Sr, re-added vit. C.+NAC, minus re-ordering some). CHANGE: Stop NAC again, since showering yesterday was tough. ALA & pine: later(?) - increases alertness; but praps more - for burning mouth? (but I have it in the more bioavailable R-ALA/RLA-form already). Hoffman says quercetin is most bioavailable in the dihydrate form. I've seen dihydrate can be extracted from the Japanese tree at 98%, and that's what mine is so I hope it's also dihydrate - at least it hasn't got additives. CoQ10/ubiquinone <150mg/d better for lp(a). Look for better honokiol & rhodiola. Starting arginine soon for lipids. Magnesium malate good for waking(?), so stopping evenings. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, 0 Sr 0x31125k.
(REGULAR as of Feb 12th (31, except I need new Mg Gly, Pf, pine bark, Zn & will be starting Ar soon): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also contains L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Feb 15th (before: see the reference post)
/19:35 A1/2 “19:00” 0PF#1 0Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/21:35 A3 “21:00” 0PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +1NAC
/21:35 Chamomile tea.
/23:35 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
(B1 “01:00” 0PF#4 0SRP#1)
Heating on! Warm shower?
!/19:35!! B2 “07:00” +ALA+2x pine bark, (teeth)
/06:05 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/06:05 B4 “07:00” EGCg + Fev/MSM + Sily
/8:25 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn (0NAC) 1xHon! DAO?
/8:25 C3 “MEAL” .5gC#1 2The2 (0NAC)
/11:50 C4 “11:00” (+2h/) gi#2 gly#1+2 0SRP#2. Nd#? & Ellagic acid
/1 DAO (D1) “13:00” 0psyllium
/16:55 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:55 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#? 0SRP#3.
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? (0)Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 0x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, 0Gi: C2,C4,D3 1x2Gly0x2Mal: 0C4+0D3, A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin+NAC A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine: Not only was sleep good/better incl. free nostrils again, I didn’t need a hot water bottle AT ALL, even after the cold shower, for the first time in “ages”. (However it is a bit warmer outside, so airing doesn’t cool down the room as much as before.)
The fatigue, with some nausea after the 3 games of TT, is I spose the main problem at the moment, and as I can still adjust NAC and normalize the rupafine there’s still some slack.

’Research’ today:

Are pale/blue lips related to reduced body temperature? Or praps both just circulation. What healthline names which is relevant is mainly oxygen and circulation, fitting to “Raynaud”-cold feet. My docs won’t say anything else than this, so I just need to keep the connection to other lesser known problems, like the MCAS
Best MCAS-food list so far, at last differentiated with criteria: https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
“Newly found freedom”: green beans, spelt, bread. Strange that yeast may be a problem (also for many other things) altho I’ve always tolerated it better than sourdough.
Also brilliant that they say raisins, altho dried fruit, are OK and figs OK-ish.
Vitamin C: Hoffman says it’s not proven, just that histamine decreases if vitamin C is higher: “Research has shown that when Vitamin C levels fall in the blood, histamine levels increase exponentially. When Vitamin C is reintroduced, histamine levels fall exponentially. There is very little evidence in the literature, however, to support its use as a natural antihistamine.” Natural Treatments for Mast Cell Activation Syndrome
(Doesn’t mention the study I’ve found that id decreases DAO tho…)
NAC: 3 controversial amino acids in Histamine Intolerance and MCAS However, N-Acetylcysteine (NAC) may cause increased histamine release from mast cells resulting in side effects in sensitive people and contradicting the beneficial effects from anti-inflammatory actions. 6
In a study using intravenous NAC infusion in humans increased histamine levels were found in just a portion of the subjects. This increase was only present in those who complained of side effects. 7
Because of the anti-inflammatory and immune-balancing properties that N-acetylcysteine appears to have, it is necessary to consider whether it can be used in mast cell- or histamine-mediated diseases. 8.

Studies "6, 7 and 8"

6 = Barrett KE, Minor JR, Metcalfe DD. Histamine secretion induced by N-acetyl cysteine. Agents Actions . 1985;16(3-4):144-146. doi:[10.1007/BF01983123](Histamine secretion induced byN-acetyl cysteine | SpringerLink.
7 = Waring WS, Bateman D. Histamine release is the associated mechanism following acetylcysteine adverse reaction in man. Clinical Toxicology . 2008;46:396.
8. Wang J, Jin Q, Hu Z, Zhou H. The effects of N-acetylcysteine on the Th1/Th2 ratio in elderly patients with chronic obstructive pulmonary disease. (Journal not supplied here).

This suggests trying to reduce the re-introduced NAC rather than the re-introduced vitamin C as cold showering was tough again yesterday.

NMH N-methylhistamine (urinal): Overview & Diagnosis - TMS - The Mast Cell Disease Society, Inc :TMS – The Mast Cell Disease Society, Inc
My only labs up to now are factor VIII (+3), lipids, genetically (& sometimes GOT&GPT) (=+1) and these aren’t mentioned for the US criteria, and I don’t feel they are independent enough of my other issues. On above page it also says that diet usually doesn’t have that much of an influence unless it’s high histamine… OK, I’ll go for it (“or prostaglandin-D2, or its metabolite, 11β-prostaglandin-F2α (24-hour urine test for any of the three)”.
https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2020/06/Mast-Cell-Activation-Syndrome-June-2020.pdf: Other conditions that may be confused with idiopathic- = i-MCAS are IBS and other gut conditions, HIT (food as a major trigger) as well as FM, CFS etc. None of these explain my allergy-type symptoms pre-fibro and post-jab tho. Also they say MCAS does by far not nec. mean low histamine diet, I am right doing as I have been: low FODMAP (in my case Mediterranean) and looking for my own triggers, much better than restricting my diet too much! MCAS is the primary non-clonal version of MCAD as opposed to mastocytosis.
“To confirm the diagnosis of i-MCAS, laboratory evidence in the form of an elevation above baseline in serum tryptase or metabolites of mast cell mediators (e.g. n-methylhistamine, prostaglandin F2-alpha, leukotriene-E4) during a period of increased symptoms should be present. Of note, the duration of increased mast cell activation symptoms may be variable from hours to days to weeks.” Patients who are suspected of having i-MCAS, but who do not meet the laboratory criteria, may be considered to have “suspected MCAS". In these patients, trials of directed therapies can continue, but only with ongoing testing for other conditions to better explain the presentation with repeat mast cell mediator testing during periods of symptoms.
… Traditional biopsy tests (including intestinal) with stains to highlight the presence of the mast cells (e.g. CD117 (KIT), tryptase) have not yielded useful diagnostic information to date."

Lessons in self-care #225 Few steps further with self-care and understanding how my MCAS works - similar to FM, but
Reasons to be cheerful #232 Today was a day where my pain/activity wasn’t good, but my spirits were up all the same, I think independently of progress.

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 16, 2022, 11:29pm

2022-02-17, Thursday 15-20% - Brain chatter stopping sleep at 6 again proves I do need the passiflora again. So a cortisol day, but used it to get things done (about 150 tabs and 50 mails), and kept table tennis down to 2 games. Suddenly tired at 19:30… calls for self-discipline…

Triggers & resulting Symptoms

SLEEP (click for details): 5h46, plus 52-3' = 49' YN = 6h35 ❌, but ➔ Feeling 90% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐 No NAC: no problem with showering. No Pf yet. 2x HWB, brain chatter, but timing 2.5h too late. Stomach burn a bit less than the last few days. So if no NAC, then at least Pf is nec.

No fw! lbu: belly tensing? No half-sitting on sofa! SUPPS & AIR 1st!
cold shower p0 Sleep 00:45- HWB#1 (tough getting to sleep)
2:32 3’ 90%/2 p0 st1 drink fw1’ air (stool!)
5:14 3’ 90%/2 p0 st1 drink fw1’ dry mouth & throat
6:25 3’ 90%/2 p0 st1 drink fw2’ brain chatter: GABA speck.
7:00: Heating on!
-6:40 awake, wind, stomach, so B1-3, wait, eat, praps nidra?
8:00- Yoga Nidra/dozing
3’ 90%/2 p0 st1 drink fw1’
-8:52 still tired, awake again.
Sum: 6h40-45-(3+3+3=)9’ 5h55-9 = 5h46, plus 52-3’ = 49’ YN = 6h35.

ACTIVITIES (aiming for 40% - well 20% - of pre-fibro) ➔ ACHE: Too little sleep means too much cortisol (always an open hen or egg question I think), so lots of rest and kept table tennis to the sweet spot of 2 games, not tempting fate ➔ 80%/2-3
"HOW DO I LOOK?" pale all day, poor dear.
ACTIONS ➔ PAINS:

Treatments

Docs:

N-methylhistamine for MCAS-proof: ordered it.
Factor VIII up: MCAS and CVD? Consequences? Cardiologist.
(Re-check my old blood Anti-P note.)

WHB (3 rounds) 16:10 1’20’’ 1’40’’ 1’30’’.
RIBOSE:

SELF-PHYSIO (click for details): 2h40 ✅. More combinations. To incite more: List-prioritizing what I might feel like doing next. Temperature 5' 36,45°C, slightly lower (interesting that I can't feel it that high, I'd've thought it's back to 35,5.)

cold shower (10’), cream fc/ey/hd/ft 7x1’, teeth 1x2’, breath exercises 4’, massage gun 8’, HWB 2x3’, hunchback-pillow 15’, AuTr 40’, facetime 3x1’, aloe vera 1’, breath-hold 12’, left foot on/under right knee/cross-legged 28’, temperature 5’, horse stance 1.5’= “3’”, loins 3’, plantar/calf stretch 3’, shaking dance 1’, airing 3x2’,

Combinations. What next?
calendula/tea tree x1’, palpate 1’, belly 3’, back 12’, hair/nails 3’, neck 1+ 2’, neck 2 4’, twist-stretch 5’, yoga/stretching 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, acupressure 6’, bent leg fall 1’,

Supps (Feb 12th: 31): Supp costs: ~344€/m (halved CoQ10, no Sr, re-added vit. C.+NAC, minus re-ordering some). CHANGE: Stop NAC again! ALA & pine: later(?) - increases alertness; but praps more for burning mouth? CoQ10/ubiquinone <150mg/d better for lp(a). Look for better honokiol & rhodiola. Starting arginine soon for lipids. Magnesium malate good for waking(?), so stopping evenings. Order Copper. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, 0 Sr 0x31125k.
(REGULAR as of Feb 12th (31, except I need new Mg Gly, Pf, pine bark, Zn & will be starting Ar soon): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also contains L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Feb 15th (before: see the reference post)
/20:15 A1/2 “19:00” 0PF#1 0Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/22:20 A3 “21:00” 0PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
/ Chamomile tea.
/22:55 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
(B1 “01:00” 0PF#4 0SRP#1)
Heating on! Warm shower?
/06:40 B2 “07:00” +ALA+2x pine bark, (teeth)
/06:40 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/06:40 B4 “07:00” EGCg + Fev/MSM + Sily
PQQ & Ω3
/07:40 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO?
/07:40 “MEAL” .5gC#1 2The2 (0NAC)
? EllA C4 “11:00” (+2h/) gi#2 gly#1+2 0SRP#2. Nd#? & Ellagic acid
1 DAO (D1) “13:00” 0psyllium
/14:50 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/17:00? D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#? 0SRP#3.
eve:

“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? (0)Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, 0Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine:
BTW did I say… ehm… what was I gonna say? It was fairly important…

’Research’ today:

Chromium to decrease glucose up isn’t proven (EU vs. USA): wpe, so not doing it.

Lessons in self-care #226 Took good care of myself as cortisol day.
Reasons to be cheerful #233 Worked thru all >160 tabs and worked thru/answered my >60 mails!

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 18, 2022, 10:07am

2022-02-18, Friday 15% - OK-ish despite pain, paperwork; interesting ‘research’

v2 16:15: Cdn’t manage 4’ of workout, but 3 games of TT without pain.
v1: Long deep night (almost 11h) with 3 passiflora added again to the antihistamine + GABA, still very awake at 4 (after 7h), solved with an alternate shower… → another 4h of sleep straight! Interesting ‘research’ on MCAS and CoV.

Triggers & resulting Symptoms

SLEEP (click for details): 10h40, up 5x (44') 🧐/✅, ➔ Feeling 80(-70)% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐. Well being again wide awake and also very tired at 4 after 7h was strange, I knew I needed sleep, and I was close to it, but something again wonky. Trying an alternate shower was perfect. The other possibility GABA sublingually didn't occur to me, but I think this was better and lead to another 4h of sleep straight, so could make up for the short nights. Also Pf#3 in A4 didn't come out, didn't realize and didn't take it, either I could've taken that with Pf#4 in B1, or at 4, seeing as I knew how much sleep I was missing. The other main problem was freezing, despite the warm part, so after shower at 4/5: Always HWB.

No fw! lbu: belly tensing? No half-sitting on sofa! SUPPS & AIR 1st!
cold shower p0 Sleep 21:05-
22:15 3’ 80%/2 p1-2 st1 drink fw1’
23:15 3’ 80%/2 p1 st1 drink fw1’ A4 (but 1 Pf#3 didn’t come out)
01:25 3’ 80%/2 p0 st1 drink fw1’
04:10 3’ 70%/2 p0 st1 drink fw1’ dozing, as tired/awake, after 7h sleep.
04:58 28’ still awake. fw 14’, then alternate warm-cold shower. Yoga Nidra.
-8:29.
Sum: 2h55+8h29-(4+4+4+4+28=)44’ = 11h24-44’ = 10h40, up 5x (44’)

ACTIVITIES (aiming for 40% - well 20% - of pre-fibro) ➔ ACHE: ➔ 80%/3
3xTT ➔ 80%/3 (not worse than before) , 3h online meeting with friends ➔ 80%/3 ➔ 80%/4
"HOW DO I LOOK?" Pale as always, poor thing, good I’m caring
ACTIONS ➔ PAINS: Sitting’s got worse , I’m thinking it’s my getting lax on my back exercises of late, after realizing my “hunchback” isn’t that bad anymore if I put a hard cushion under it for a time at time: Not enough! Neck was a little stiff at night, so bit of neck ex. soon please. Occasional pee pain.

Treatments

Docs:

N-methylhistamine for MCAS-proof: came today, using it from Sunday to Monday.
Factor VIII up: MCAS and CVD? Cardiologist. Hyperlipidemia from MCAS??
(Re-check my old blood Anti-P note.)

WHB (3 rounds) 15:25 1’30’’ 1’30’’ 2’
RIBOSE:

SELF-PHYSIO (click for details): 2h21 ✅. More combinations. To incite more: List-prioritizing what I might feel like doing next. temperature 36,55°C - a little higher again.

aloe vera 1’, plantar/calf stretch 3’, hand-exerciser 5’, airing 1x2’, cold shower (10’)+(10’), cream fc/ey/hd/ft 5x1’, breath exercises 4’, hair/nails 2’, Timing, hunchback-pillow 15’, HWB 2x3’, facetime 1x1’, temperature 5’, teeth 3x2’, Y. Nidra 30’, workout 4’ (had to keep it down, then break it off = worse than yesterday), massage gun 4’, breath-hold 12’, left foot on/under right knee/cross-legged 14’, loins 1’, twist-stretch 2’,

Combinations. What next?
palpate 1’, belly 3’, back 12’,

Supps (Feb 12th: 31): Supp costs: ~344€/m (halved CoQ10, no Sr, re-added vit. C.+NAC, minus re-ordering some). CHANGE: Stop NAC again! ALA & pine: later(?) - increases alertness; but praps more for burning mouth? CoQ10/ubiquinone <150mg/d better for lp(a). Look for better honokiol & rhodiola. Starting arginine soon for lipids. Magnesium malate good for waking(?), so stopping evenings. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, 0 Sr 0x31125k.
(REGULAR as of Feb 12th (31, except I need new Mg Gly, Pf, pine bark, Zn & will be starting Ar soon): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also contains L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Feb 15th (before: see the reference post)
/19:20-30 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/21:05 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
/21:05- Chamomile tea.
/23:15 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
PF#3 stayed stuck,
/01:30 B1 “01:00” PF#4 0SRP#1
Heating on! Warm shower?
/08:40 B2 “07:00” +ALA+2x pine bark, (teeth)
/08:40 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/08:40 B4 “07:00” EGCg + Fev/MSM + Sily
/10:20 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO?
/10:20 C3 “MEAL” .5gC#1 2The2 (0NAC)
?14:00 12:00 C4 “11:00” (+2h/) gi#2 gly#1+2 0SRP#2. Nd#? & Ellagic acid
DAO (D1) “13:00” 0psyllium
/16:15 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/19:45 (but didn’t seem to contain Rs…) D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#? 0SRP#3.
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? (0)Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, 0Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development

Jab-sfx/MCAS/antihistamine:
What was the important thing I was gonna write yesterday? I’ll remember soon…

’Research’ today:

- MCAS and COVID and jabs: One of the world experts, Afrin wrote Mar21 that these may be very related, also in his anecdotal experience and still urges to take the jab after being on an MCAS regimen: General Thoughts on MCAS and Covid by Dr. Afrin - AIM Center for Personalized Medicine
On pubmed the MCAS / CoV connection is mentioned in about 5 studies, e.g.

Mast cell activation symptoms are prevalent in Long-COVID - PubMed (US/Ge 2021, incl. Afrin & Molderings): MCAS is similar to long CoV. Mast cell activation symptoms are prevalent in Long-COVID
Long-COVID syndrome-associated brain fog and chemofog: Luteolin to the rescue - PubMed (US/Greece 2021): luteolin might help in Long-CoV as in CFS and MCAS, similarly 2020 COVID-19 and Multisystem Inflammatory Syndrome, or is it Mast Cell Activation Syndrome? - PubMed connecting Multisystem Inflammatory Syndrome to MCAS, preferring luteolin and rupatadine (aaahhh!) “which also has anti-platelet activating factor (PAF) activity and inhibits mast cells that have been implicated in the pathogenesis of cytokine storms in COVID-19.” Again, I’m doing it right.
This worldwide from 2020 was very careful: CoV may be dangerous for some with MCAS Risk and management of patients with mastocytosis and MCAS in the SARS-CoV-2 (COVID-19) pandemic: Expert opinions - PubMed
This US 2021 study Post-Acute COVID-19 Syndrome and the cardiovascular system: What is known? refers to above but is unsure how the connection is.
Afrin/Weinstock/Molderings 2020: Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome.
https://www.healthrising.org/forums/resources/mast-cell-activation-disease-the-modern-epidemics-of-chronic-illness-afrin.338/: Spin off from luteolin
- Other ‘research’:
Atorvastatin interaction with antihistamines? This Egyptian study from 2018 shows no problems, rather the atorvastatin is also immunomodulatory! Role of Atorvastatin in Treatment of Chronic Spontaneous Urticaria Patients: A Controlled Clinical Trial - PubMed (I thought I’d read it’d be difficult taking a statin with an antihistamine, but can’t find that anywhere)
Hyperlipidemia with MCAS? If at most triglycerides.
Glutamine helps histamine intolerance, as it refers here Mast Cell Activation Syndrome with Dr. Lawrence Afrin to a Chinese study from 2016 Effects of glutamine on markers of intestinal inflammatory response and mucosal permeability in abdominal surgery patients: A meta-analysis - PubMed. However it also decreases DAO: “CRP, TNF-α, and IL-6 in patients supplemented with Gln [= glutamine] were significantly lower than those in control patients, whereas the levels of IL-2 receptor were increased by Gln supplementation. Gln also significantly decreased the lactulose/mannitol ratio, the levels of diamine oxidase and endotoxin, and tended to decrease the levels of cyclic D-lactic acid”. However does the decrease in cytokines outbalance the decrease in DAO…!? (Spinoff from hyperlipidemia with MCAS.)
Ruscio’s webpage above also starts with “And, here is the kicker… [MCAS] doesn’t require extensive lab testing nor expensive treatments for many cases.” Well… not sure of that…
“there really is no system in the body which is immune, so to speak, to potentially being affected by this disease, not even the immune system.” Yup.

Lessons in self-care #227 Watched for not overdoing it, apart from the video meeting with mates…
Reasons to be cheerful #234 Finally did some paperwork - sickness insurance bills:crazy_face:

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 18, 2022, 9:11pm

2022-02-19, Saturday 15% - lively night, good day, but even doing hardly anything was too much…

v2 13:45 lively night, but no big problems, incl. tummy, everything else the same, starting more home office work since my MCAS journey is fairly finalized.

(v1:) I’ve been using two sets of percentages, the one since Oct21 is my maximum activity level, which I’m now using to say in absolute terms how well I’m doing, not feeling, e.g. yesterday 15%. All my % / pain points are often independent of one another:

how “well”/“good” I’m feeling, usually “FeelWell 50-80%” post-jab; pre-jab 70-90%.
being mentally fit usually “MentFitn 100%”,
an activity level of usually “ActLev 5-30%” post-jab; pre-jab 25-35%.
the Ache of usually “Ache 1-4”,
local pains usually “LocPn 1 or even 0” (was 2-5),
sleep effectivity: <1h in 4-5 sleep breaks, restorative, not tired, usually “SlpEff 80%” (was 40%)

Up to Sep21 I’ve been using mainly and , from Oct21 , I haven’t ever been noting because it hardly changes , and for and I’ve been using // (which suffices, as it’s often ). I haven’t been using above abbreviations, but thinking about doing so, to clarify.

Triggers & resulting Symptoms

SLEEP (click for details): 7h58, up 4x (1h15), SlpEff = ✅ (80%), and ➔ Feeling 90% well, Ache 2 of 7 ✅, getting up: 80%/2 🧐. Tonight I managed to find exactly what my body & mind needed in various challenges: I did my back exercises next door to get my back unrest down

No fw! lbu: belly tensing? No half-sitting on sofa! SUPPS & AIR 1st!
cold shower/breath ex. p0 air Sleep 23:45-
2:05 11’ 90%/2 p0 st1 drink fw8’ teeth B1 air
3:18 38’+5’ 90%/2 p0 st1 drink fw30’ 8’ back ex. fw5’
5:15 15’ 90%/2 p0 st1 drink 6: 10’ + HWB3’
7:11 6’ 90%/2 p0 st1 drink heating, air
-8:58 80%/2 p0 st1 drink air
Sum: 15+8h58-(11+43+15+6=)1h15 = 9h13-1h15= 7h58, up 4x (1h15)

ACTIVITIES (40% of the activity level of pre-fibro is the new ) ➔ ACHE: Resting ➔ 80%/2 , TT ➔ 80%/3 . Achey fatigue/tired at 18:00 70%/3-4
"HOW DO I LOOK?" Pale as ever
ACTIONS ➔ PAINS: . Back unrest at night made me do exercises & reminded me to definitely start doing them 1-2x/d again, 1-2xp1

Treatments

Docs:

Factor VIII up: MCAS and CVD? Cardiologist. Hyperlipidemia from MCAS?? Pale lips?
Tomorrow morning I start the N-methylhistamine check to praps increase “hard facts” for MCAS. If not: Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or leukotriene E4. Or just accept the vagueness, who cares!
(re-check my old Anti-P note.)

WHB (3 rounds) 1’40’’ 2’30’’ 2’
RIBOSE: 13:55

SELF-PHYSIO (click for details): 2h58... ✅. Combine. List-prioritize: next. Temperature Friday evening: 35,5°C, so now several times a day to make sure. 12:22 36,45°C

facetime 2x1’, airing 4x2’, cold shower (10’), cream fc/ey/hd/ft 2x1’, teeth 2x2’, HWB 3’, breath exercises 4’, Timing, hunchback-pillow 15’, Y. Nidra 30’, palpate 1’, belly 1+3’, back 8+10’, breath-hold 11’, left foot on/under right knee/cross-legged 48’, 3x/d: temperature 5’+5’, twist-stretch 4’, hair/nails 4’,
Combine: next? massage gun 20’, shaking dance 1’, workout 7’, horse stance 1’,

Supps (Feb 12th: 31): Supp costs: ~344€/m (halved CoQ10, no Sr, re-added vit. C.+NAC, minus re-ordering some). CHANGE: Stop NAC again! ALA & pine: later(?) - increases alertness; but praps more for burning mouth? CoQ10/ubiquinone <150mg/d better for lp(a). Look for better honokiol & rhodiola. Starting arginine soon for lipids. Magnesium malate good for waking(?), so stopping evenings. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, 0 Sr 0x31125k.
(REGULAR as of Feb 12th (31, except I need new Mg Gly, Pf, pine bark, Zn & will be starting Ar soon): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also contains L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Feb 15th (before: see the reference post)
/?20:15 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/21:50 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
Chamomile tea.
/23:35 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/02:10 B1 “01:00” PF#4
Heating on! Warm shower?
/7:15 B2 “07:00” +ALA+2x pine bark, (teeth)
/7:15 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/7:15 B4 “07:00” EGCg + Fev/MSM + Sily
/10:50 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO?
/10:50 C3 “MEAL” .5gC#1 2The2 (0NAC)
/12:25 Sat.: vitD3/K2.
/12:50 C4 “11:00” (+2h/) gi#2 gly#1. Nd#? & Ellagic acid
Ginkgo from /13:50 on again.
1 DAO (D1) “13:00” 0psyllium
/14:50 D2/3 0gi"15:00" .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/17:05 D4 “+1gi 17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#?
eve:
20:25 A1/2
11x.1g CoQ10 ubiquinol tomorrow from B2 to D4.
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? (0)Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!, fatigue: increase to 1.8g for a short time!?) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine:
Becoming freer in my diet. But incredibly fatigued and tired at 18:00: Young cheese, some green beans?! Is food a trigger after all?

’Research’ today:
As “post exertional malaise” is my main remaining symptom for fibro and MCAS since all supps & antihistamine etc., I’ve had another look and found

There looking into “branched-chain amino acids (BCAA) — 5 grams”. BCAAs leucine, isoleucine] and valine are said to help after exertion, reducing glucose, mine is elevated, however acc. to studies only “during” exercise, not mid-term, and may improve serotonin, but that’s not clear to me (wikipedia).

I can’t try corticosteroids, mestinon (pyridostigmine), cannabis, cumin.
I could - as it says in a post below - most easily try increasing

D-riboseto 3x/d (3x5g??) or
CoQ10 to 1.8g!!
cold therapy = showers
No idea about
Sodium bicarbonate (baking soda) — 2 grams (half of a level teaspoon).
Citrate supplements — 3 grams.
Creatine hydrochloride — 2 grams.
Citrulline — 1000 mg.
Catalase — 600 mg (taken after exercise).
Chinese skullcap root (Scutellaria baicalensis) — 3-6g 2-3x/d.

The NHS on a page about supps for CFS & FM links to this 2017 study saying there’s no evidence: Vitamin and mineral status in chronic fatigue syndrome and fibromyalgia syndrome: A systematic review and meta-analysis - PubMed and similar here: https://pubmed.ncbi.nlm.nih.gov
/28111818/

Lessons in self-care #228 Sooo tired, shdve gone to bed earlier, but wanted to do too much. But it’s still earlier than yesterday at least.
Reasons to be cheerful #235 Again got quite a bit of stuff done.

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 20, 2022, 11:41am

2022-02-20, Sunday 15% → 10% → 5% - night OK, day bad: food or I think jab#2.

Triggers & resulting Symptoms

SLEEP (click for details): 9h01, up 4x (59') ✅, ➔ Feeling 90% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐

cold shower p0 Sleep 22:55-
1:00 3’ 90%/2 p0 st1 drink fw1’
3:30 15’ 90%/2 p0 st1 drink fw1’ HWB air. temp. 35,3°C.
4:17 38’ 90%/2 p0 st1 drink fw1’ alternate shower. supp-mail. -4:55 (shdve tried GABA.)
7:22 3’ 90%/2 p0 st1 drink fw1’ B234. temp. 35,8°C.
7:00: Heating on!
-8:55 air. temp
Sum: 1h05+8h55-(3+15+38+3=)59’ = 10h-59’ = 9h01, up 4x (59’)

ACTIVITIES (aiming for 40% - well 20% - activity of pre-fibro) ➔ ACHE: Well despite resting I’m just not feeling well ➔ 70%/3 - 10’ cycle-walk was max…
(e.g. cycle , TT , meetings/social , mask , kids , work ➔ ?80%/2) ?
"HOW DO I LOOK?" poorly pale 10:30 12:35 16:10
ACTIONS ➔ PAINS:
(e.g. lie, stand, loins, sit, arms up, neck, stiff, walk, cycle, 0xp1-2, GI, talk, mask.)

Treatments

Docs:

Factor VIII up: MCAS and CVD? Cardiologist. Hyperlipidemia from MCAS?? White Lips?
N-methylhistamine check. If not, next: Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or leukotriene E4. Starting 9:30
(re-check my old Anti-P note.)

WHB (3 rounds) 1’20’’ 2’ 1’50’’ 12:55 3x1’30’’
RIBOSE:

SELF-PHYSIO (click for details): 3h53... ✅. Combine. List-prioritize: next. Axillary temperature 3:30 35.3°C 7:20 35.8°C 9:10 35.95°C, 12:20 36.15°C. 14:15 36.5°C (ate till 15:40) 16:20 36.3°C - so this is all normal, see below.

Supps (Feb 12th: 31): Supp costs: ~344€/m. CHANGE: CoQ10/ubiquinone <150mg/d better for lp(a), but tried high dosed today, to no avail. Look for better honokiol, rhodiola AND PASSIFLORA! Starting arginine soon for lipids. Tried capsule machine for carnitine, too, ages cos it went pretty wrong. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, 0 Sr 0x31125k.
(REGULAR as of Feb 12th (31, Need new pine bark, Zn etc., still haven’t started Ar): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also contains L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Feb 15th (before: see the reference post)
/20:30 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/22:35 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
/22:35 Chamomile tea.
/01:00 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/03:35 B1 “01:00” PF#4
Heating on! Warm shower?
/07:25 B2 “07:00” +ALA+2x pine bark, (teeth)
/07:25 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/07:25 B4 “07:00” EGCg + Fev/MSM + Sily
/10:40 +1=2Gi C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO?
/10:40 +Gi C3 “MEAL” .5gC#1 2The2 (0NAC) ate -11:40
/12:40 C4 “11:00” (+2h/) gi#2 gly#1. Nd#? & Ellagic acid
/14:10 1 DAO (D1) “13:00” 0psyllium
/15:30 +4 Q10 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:15 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#?
eve: I put coQ10 +D4.
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? (0)Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine:
11:50 itchy-burning skin lower back and legs. Only thing I’ve changed is increasing CoQ10, except yesterday’s cheese and beans. 12:30 now arms too. 12:35 face & backside & knees
Using more CoQ10 this morning (phoenixrising) if at all worsened
’Research’ today:

Body temperature: Normal axilliary temperature can be as low as 34.7°C. Fluctuation of 1°C is normal, lowest at 3 (avg. 36°C), highest at 18 (avg. 37.2°C. REM sleep increases when the room temperature is warm and comfortable. For every ten years of life, it drops by around 0.1 to 0.15 °C.

https://medlineplus.gov/ency/article/003400.htm: armpit 0.3-0.6°C less. Fever is 1-1.5°C more.
Measuring body temperature using a tympanic thermometer | Nursing Times 36.0-37.5°C around 36.9°C. slight increases can occur in the evening, during exercise. * Hypothermia: temperature <36.1°C. 35.1-36.1°C: min. 4-6h observation.
What is core temperature? How is it measured? | ONiO

body temperature is always going up and down and even varies from person to person… Over the course of a day, your body temperature fluctuates several times, reflecting the many changes in your body’s state. Usually, core temperature is 1-2 degrees higher than the temperature at the periphery. At times when the peripheral temperature is increased, due to the adaptive mechanisms described above, the difference between the core and peripheral temperature is at its lowest. Direct measurement of core temperature requires the insertion of a surgical probe and measuring the temperature of the inner organs.

Normal Body Temperature: A Systematic Review
axillary at 35.97°C. on average, healthy elderly people have lower body temperature. … believed to be a phenomenon arising from a slowing of the human metabolic rate coupled with a decline in the ability to regulate body temperature in response to environmental changes such as seasonal changes … often not capable of mounting a strong inflammatory response to infection and disease, with their temperature failing to reach the temperature range of what is traditionally considered the fever temperature range …
Health Library | Michigan Medicine Body Temperature | Michigan Medicine Check your temperature in both the morning and evening. Body temperature can vary by as much as 1°F (0.6°C) during the day.
Wait at least 20 to 30 minutes after … you eat, or … drink… an hour after hard exercise or a hot bath. . An armpit temperature reading may be as much as 1°F (0.6°C) lower than an oral temperature reading.
https://www.microlife.com/magazine/fever/how-to-measure-body-temperature-correctly: in adult patients, the temperature of an axillary measurement is lower than a rectal measurement - up to 1.9 °C! The normal axillary temperature range is approximately between 34.7 °C and 37.3 °C.
Body temperature: normal ranges & how to measure - cosinuss° (German) Hypothermia is the term used for a drop in core body temperature below 35 °C. The core body temperature fluctuates between 0.5 and 1 °C during the course of a day. These diurnal fluctuations are known as the “circadian rhythm”. The temperature is lowest at around 3 a.m. and highest at around 6 p.m. (graph shows 2pm tho!), source: https://www.thieme.de/statics/bilder/thieme/final/de/bilder/tw_pflege/Kapitel_15.pdf: Am niedrigsten ist die Temperatur um ca. 3 Uhr, am höchsten um ca. 18 Uhr. Thus, an average of about 36.2°C orally (36.0°C axillary and 36.5°C rectal) is measured in the morning and about 37.5°C orally (37.2°C axillary, 37.8°C rectal) in the evening. The basal body temperature describes the individual minimum core body temperature at rest during sleep. In order to be able to record the basal body temperature, it is measured in the morning directly after waking up. Different phases are passed through during sleep. If we are in so-called REM sleep (REM = rapid eye movement) or “dream sleep,” our body is very active. However, as a study published in 2019 found, we are unable to regulate our body temperature during this phase. The researchers found that REM sleep increases when the room temperature is warm and comfortable. Special neurons in the hypothalamus appear to increase REM sleep when the room temperature is “just right” and thus the body’s need for thermoregulation is lowest, according to the study. With increasing age, a person’s body temperature decreases. For every ten years of life, it drops by around 0.1 to 0.15 °C. This is due, among other things, to the reduced release of pyrogens (fever-producing substances) and a decrease in thermoregulation. For this reason, older people often no longer exhibit significantly elevated temperature values even in the case of severe infectious diseases. Approximately 30% no longer develop a fever, even though a severe infection is present. meals can lead to a (temporary) increase in body temperature. [Many influences, external and internal listed.]

This thread on s4me questions MCAS as diagnosis, questions Afrin’s authority. As people I’ve “had a look” at Afrin, Molderings, Weinstock, Dempsey… and no - none of them convince me as people. But the concept is helping me. Continuing with that thread.

Lessons in self-care #229 Starting having to move extremely slowly again. Playing cards I slid my hand, cos my arms were so heavy.
Reasons to be cheerful #236 Not much, Big Bang Theory and just taking it like a dog.

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

Freedom · February 21, 2022, 1:32am

Hi JayCS, I was just reading your thread. I was thinking about your white lips. The first thing that came to my my mind was vasoconstriction. Do any of your meds/ supps that cause your veins and or your arteries to constrict? Thus causing a decrease in blood supply. Second thought was pulmonary. Is there anything possibly decreasing the oxygen to your lips and or possibly other organs? Third thought was anemia. How is your hemoglobin? Fourth thought was…I’m sure JayCS has already thought about and researched questions 1, 2 and 3!

JayCS · February 21, 2022, 1:40pm

2022-02-21, Monday 15-10% -

Triggers & resulting Symptoms

SLEEP (click for details): 8h25, up 5x (35') ✅, but ➔ Feeling 70% well, Ache 3 of 7 ❌, getting up: 80%/3 🧐. Bit of unrest, maybe some extra back exercises nec?

cold shower p0 Sleep 22:30-
23:55 5’ 70%/3 p0-1 st3 drink fw2’ air A4 HWB
1:17 15’ 70%/3 p0 st3 drink fw2’ B1
3:12 5’ 70%/3 p0 st3 drink fw2’ creamed dry nostrils:.
4:20 5’ back ex
5:23 5’ 70%/3 p0 st3 drink fw1’ nostril a bit. urine: 1l 9:30-21:30, 1l 21:30-5:30!
burning & dry mouth
20’’ 2nd shower cold and/or warm (nostrils)! HWB! Chatter: GABA-speck? SUPPS & AIR 1st!
7:00: Heating on!
-7:30
Sum: 1h30+7h30-(5+15+5+5+5=)35’ = 9h - 35’ = 8h25, up 5x (35’)

ACTIVITIES (aiming for 40% - well 20% - physical activity of pre-fibro) ➔ ACHE: Start quite OK, but from midday on ➔ 70%/3, so put off an appointment for tomorrow.
"HOW DO I LOOK?" Pale as ever.
ACTIONS ➔ PAINS:

Treatments

Docs:

Factor VIII up: MCAS and CVD? Cardiologist. Hyperlipidemia from MCAS?? White Lips?
N-methylhistamine to doc. It’ll probably take a while. If not: Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or leukotriene E4.
(re-check my old Anti-P note.)

WHB (3 rounds) 14:45 3x1’30’’
RIBOSE: 16:30 2g

SELF-PHYSIO (click for details): 1h28... ✅. Combine. List-prioritize: next.

cream fc/ey/hd/ft 1x1’, facetime 2x1’, airing 4x2’, cold shower (10’), breath exercises 3’, teeth 2x2’, HWB 3’, hunchback-pillow 15’, Timing, Y. Nidra 5’, back 8’, left foot on/under right knee/cross-legged 16’, breath-hold 11’, horse stance 1’, aloe vera 1’,
Combine: next?

palpate 1’, belly 3’, hair/nails 3’, neck 1+ 2’, neck 2 4’, plantar/calf stretch 5’, twist-stretch 5’, loins 5’, yoga/stretching 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, massage gun 20’, shaking dance 1’, acupressure 6’, bent leg fall 1’, calendula/tea tree x1’,

Supps (Feb 12th: 31): Supp costs: ~344€/m. CHANGE: CoQ10/ubiquinone <150mg/d better for lp(a), no high dose again. Look for better honokiol, rhodiola AND PASSIFLORA! Starting arginine soon for lipids - didn't find time again.... Tried capsule machine for carnitine, too, ages cos it went pretty wrong. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, 0 Sr 0x31125k.
(REGULAR as of Feb 12th (31, Need new pine bark, Zn etc., still haven’t started Ar): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also contains L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Feb 15th (before: see the reference post)
/20:30 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/22:05 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
/21:30 Chamomile tea.
/23:55 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/01.15 B1 “01:00” PF#4
Heating on! Warm shower?
/07:35 B2 “07:00” +ALA+2x pine bark, (teeth)
/07:35 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/07:35 B4 “07:00” EGCg + Fev/MSM + Sily
/11:20 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO?
/11:20 C3 “MEAL” .5gC#1 2The2 (0NAC)
/13:10 C4 “11:00” (+2h/) gi#2 gly#1. Nd#? & Ellagic acid
1 DAO (D1) “13:00” 0psyllium
/14:35 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/17:20 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#?
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? (0)Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine:
Burning dry mouth at 5, nostril a bit at 7. The antihistamine dries out my nostrils a bit, so I have to cream them.

’Research’ today:
Jonathan Edwards writes about MCAS: “It is a quack diagnosis because it doesn’t actually mean anything. Normal people have mast cells and they get activated and we know what that looks like. There is no pathological ‘syndrome’ that is different from that and which is not already known under asthma or urticaria or mastocytosis or what has been in the textbooks for decades. The guy who tries to sell this idea, Lawrence Afrin, I thought might be some bright new immunology whizkid with something special to say. But from his videos he comes across as another ageing muddled empire builder who has no real idea what he is talking about.”
So he is a UK doc, professor & researcher, arguing on an evidence based ME/CFS forum in 2020 that MCAS as diagnosis seems pretty much Afrin’s one man show and that Afrin’s self-presentation, arguments and claims how many other diseases it can explain rather convince him of the opposite. Now in 2022, Afrin has published a paper expressing his suspicion that this may be true after HPV vaccines, see also his website and article on long COVID (2020). I admit I’m of/in two minds about this. It shocked me a bit, but I also had similar thoughts about these aspects when I saw Afrin’s webpage and also seeing a short interview with Gerhard Molderings. I’m very used to seeing docs and scientists say they are sure of things that aren’t at all certain - I have a very scientific and critical mind, however much I experiment with unproven stuff. However there is a case for MCAS becoming more and more accepted aside from Afrin’s and Molderings’ studies due to there being ICD-10-criteria (if not WHO) and a wikipedia article which isn’t critical in any way, which is unusual. What Edwards would accept more easily, like he does for ME/CFS, is a well defined set of symptoms, and would separate that from conjecture about causes (which in the case of mast cells Edwards argues have long been proven for certain diagnoses).

After all that I’d argue that I see a lot of vagueness about the diagnosis and treatments and I see the people as a bit too self-convinced, so I’m not taking it too seriously until more research proves it better, but as it’s all helping me and nothing else is, I’m also annoyed by people like Edwards doing the same by doing the opposite (i.e. be too self-convinced about other researchers seeming too self-convinced). It’s a good working hypothesis.

A diagnosis may be important for disability, insurance or getting treatments, but as long as it doesn’t make a difference for that, as it seems in my case, a vague diagnosis is enough for me.
Same as the fibro diagnosis, actually - just a pointer to find what treatments to look at generally, whilst I focus on each symptom singly. As long as research can’t get closer…

Lessons in self-care #230 Put off tomorrow’s appointment. No hurry.
Reasons to be cheerful #237 Still got on with a bit of stuff, didn’t miss table tennis too much.

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 21, 2022, 2:48pm

Hi Freedom, thanks very much for focusing on this one of my recent questions!
Reminder: My wife uses my lip colour to decide how well I look & I wanted that to guide me when I may be overdoing it. - However I’ve realized they are usually pale, white or even whitish-blue, whilst they are sometimes a little reddish altho I’m in pain already. I’ve always had a pale complexion so it’s not completely out of the ordinary, but my wife knows what she’s doing, it’s obviously got worse.
So having noticed it as a sign, I’m trying to understand it better.
And I had tried to ‘research’ it, but not satisfactorily.
Vessels: Just made sure: 4 of the supps I take at the moment, and several I have taken, dilate, increase blood flow, decrease pressure (which works), and my antihistamine does that now too, and none of them do the opposite. Breathing exercises do it too, whilst a minute of cold showering constricts them which serves only to dilate them even more.
Oxygen: This is the one I’m not sure of. My lung function and cell actions seem normal. Pneumologists/pulmonologists are about the only type of doc (bar immunologist and gyn. ) which I haven’t been to yet. But sleep lab and heart exams didn’t show any problems. I haven’t got an oximeter at home, but whenever it’s measured, it’s fine. My vague idea has always been it’s on a cellular level, e.g. mitochondrial function, but that’s hard to prove. I’ll be asking my GP and cardiologist tho: But have you got another idea in this direction?
Blood: My hemoglobin is normal, my iron too, and I have more than enough B12 (I booster it skyhigh every few months). My glucose is too high rather than too low. However regarding iron and blood vessels a strange symptom: hundreds of orange spots on my legs and feet, which docs have argued about, but the consensus is mainly iron deposits due to vascular problems.
So more circulatory? Again something for my cardiologist…

JayCS · February 21, 2022, 7:02pm

2022-02-22, Tuesday 10%-5% - hard to move: stiff, & sinuses too: jab#2 on day 12 now in full effect!

Triggers & resulting Symptoms

SLEEP (click for details): 9h35, up 3x (15') ✅, but ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐, very ?overdeep sleep, similar to the jab#1-sfx

cold shower p0 Sleep 22:30-
1:15 5’ 80%/2 p1 st3 drink fw2’ Sore throat. Air. Dry nostrils. Left nostril congested. air
3:24 5’ 80%/2 p0 st2 drink fw2’ sore throat, left nostril like a cold. air
6:15 5’ 80%/2 p0 st3 drink fw2’ same, but right (alternating several times), slightly nauseous. air
7:00: Heating on!
-8:20
Sum: 1h30+8h20-(3x5’=)15’ = 9h50-15’ = 9h35, up 3x (15’)

ACTIVITIES (aiming for 40% - well 20% - physical activity of pre-fibro) ➔ ACHE: Resting, hardly doing anything ➔ 70%/3, 30’ shop ➔ 60%/3-4 for a time, then back “up”.
(e.g. cycle , TT , meetings/social , mask , kids , work ➔ ?80%/2) ?
"HOW DO I LOOK?" Bad today 5x
ACTIONS ➔ PAINS: Few quick ones, got 'em down immediately.

Treatments

Docs:

Factor VIII up: MCAS and CVD? Cardiologist. Hyperlipidemia from MCAS?? White Lips?
N-methylhistamine? If not: Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or Leukotriene-E4.
(re-check my old Anti-P note.)

WHB (3 rounds) 16:20 1’ 1’30’’ 1’25’’
RIBOSE:

SELF-PHYSIO (click for details): 1h35 ✅. Combine. List-prioritize: next.

facetime 6x1’, airing 4x2’, cold shower (10’), cream fc/ey/hd/ft x1’, teeth 2x2’, HWB 3’, breath exercises 4’, Timing, hunchback-pillow 15’, palpate 1’, belly 3’, back 12’, breath-hold 11’, left foot on/under right knee/cross-legged 10’, plantar/calf stretch 2’, massage gun 3’,
Combine: next? horse stance 1’.

calendula/tea tree x1’, Y. Nidra 20’, hair/nails 3’, neck 1+ 2’, neck 2 4’, twist-stretch 5’, loins 5’, yoga/stretching 5’, jolt-jump 1’, marionette-hang 1’, workout 7’, hand-exerciser 3’, shaking dance 1’, acupressure 6’, aloe vera 1’, bent leg fall 1’,

Supps (Feb 12th: 31): Supp costs: ~344€/m. CHANGE: CoQ10/ubiquinone <150mg/d better for lp(a). Look for better honokiol, rhodiola AND PASSIFLORA! Starting arginine soon for lipids. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, 0 Sr 0x31125k.
(REGULAR as of Feb 12th (31). Ordered pine bark, Cu, Zn, passionflower & rhodiola. Ar 0, cos maybe bad for lp(a)!): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also contains L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Feb 15th (before: see the reference post)
/19:45 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/22:00 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
Chamomile tea.
/01:15 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/03:25 B1 “01:00” PF#4
Heating on! Warm shower?
/08:30 B2 “07:00” +ALA+2x pine bark, (teeth)
/08:30 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/08:30 B4 “07:00” EGCg + Fev/MSM + Sily
/10:10 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO?
/10:10 C3 “MEAL” .5gC#1 2The2 (0NAC)
/14:15 C4 “11:00” (+2h/) gi#2 gly#1. Nd#? & Ellagic acid
1 DAO (D1) “13:00” 0psyllium
/15:50 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:50 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#?
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: 0! (0)Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine:
After getting up stiff and eye/head pressure at 8:30, sinuses building up at 9:55 (need GABA/food)
11:40 Still very stiff, still sinuses despite eating. Remembered now that this overdeep sleep was the same after jab#1.
If it were food: I ate a little green beans and tiny slids of the young cheese, both may’ve caused a flare 2 days ago, but with 5x the amount. So if I don’t repeat it today, will it get better again? That’d be #2.
Floored most of the day.

’Research’ today:
A new study was published today on JAMA that there is only a low risk for quick allergic reaction to a 2nd mRNA jab after one on the first. No help for me there…
Also today a French editorial was published on JAMA about taking statins: “The message for clinicians is, therefore, that the level of LDL-C should be lowered below 70 mg/dL by any means after an ischemic stroke in patients with evidence of atherosclerosis. For those [after an ischemic stroke] without atherosclerosis, the benefit of lowering the level fo LDL-C below 70 mg/dL vs between 90 and 110 mg/dL is much smaller, and an individualized evaluation of the risk to benefit ratio, bearing in mind a small increase in risks of intracerebral hemorrhage and type 2 diabetes, is needed.”
Also today a similar Chinese meta-review was published about statins concluding amongst less relevant things for me "For patients without evidence of atherosclerosis, intensive LDL-C–lowering statin-based therapies might not be needed in most situations considering the uncertain benefits of secondary stroke prevention and the increased risk of hemorrhagic stroke associated with intensive LDL-C lowering.

Lessons in self-care #231 My wife tries to help, but many things are better to do alone.
Reasons to be cheerful #238 Considering I’m basically floored, I’m doing quite well in between.

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 23, 2022, 11:37am

2022-02-23, Wednesday 10% - Sacrificed self-discipline for a major bit of paperwork - worth it. So were the really bad days cheese & beans after all?

14:15 Managed 2 games of , my mate picked up every ball I cdn’t hit, but I landed one brilliant back-hand smash-hit .
all the jab#1 symptoms returning, bit by bit, like sore throat, abdomen pain, sleep…! Mad enough to try a bit of altho I can hardly move.

Triggers & resulting Symptoms

SLEEP (click for details): 8h20, up 2x (35') ✅, and ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 80%/3 ❌

cold shower p0 Sleep 23:15- After laughing to a Big Bang Theory episode. HWB. breath ex.
1:45 18’ 80%/2 p0 st1 drink fw2’ sore throat (now doesn’t that ring a bell!! - like jab#1) - calendula ess. air
4:47 17’ 80%/2 p0 st1 drink fw2’ sore throat, calendula ess. pain in gall bladder area (top right abdomen) - HWB. air.
In between?
7:00: Heating on!
-8:10 45+8h10-(18+17=)35’ = 8h55-35’ = 8h20, up 2x (35’)
Sum:

ACTIVITIES (aiming for 40% - well 20% - physical activity of pre-fibro) ➔ ACHE: Resting ➔ 70/80%/3, altho praps it’s more an Achey fatigue than the real painful fibro-Ache(?). TT
"HOW DO I LOOK?" Energy, but tired & weary & white as a sheet
ACTIONS ➔ PAINS: Occasional stabs → massage gun at most.

Treatments

Docs:

Factor VIII up: MCAS and CVD? Cardiologist. Hyperlipidemia from MCAS?? White Lips?
N-methylhistamine? If not: Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or Leukotriene-E4.
(re-check my old Anti-P note.)

WHB (3 rounds)
RIBOSE: 5mg before

SELF-PHYSIO (click for details): 65'... ✅. Combine. List-prioritize: next.

Supps (Feb 12th: 31): Supp costs: ~344€/m. CHANGE: CoQ10/ubiquinone <150mg/d better for lp(a). Waiting for ordered pine bark, Cu, Zn, passionflower & rhodiola. Look for better honokiol. arginine 0 after all, since praps bad for lp(a)! RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, Sr 31125k.
(REGULAR as of Feb 12th (31 Cu, pine, pf, rho, Zn coming): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also contains L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Feb 15th (before: see the reference post)
/19:45 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/22:05 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
Chamomile tea.
/23:05 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/01:45 B1 “01:00” PF#4
Heating on! Warm shower?
/08:30 B2 “07:00” +ALA+2x pine bark, (teeth)
/08:30 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/08:30 B4 “07:00” EGCg + Fev/MSM + Sily
/09:55 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO?
/09:55 C3 “MEAL” .5gC#1 2The2 (0NAC)
/11:55 C4 “11:00” (+2h/) gi#2 gly#1. Nd#? & Ellagic acid
0 DAO (D1) “13:00” 0psyllium
/17:20 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/19:20 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#?
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? (0)Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine:
Funny how symptoms like the severe sore throat at night after a while ring a bell!! - just like jab#1. Same with the deeper leaden sleep… Not much “missing” - of the 25+ these aren’t as bad as last time up to now: #10 cold #12 nausea #14 feverishness & the focal seizures directly after jab#1 (not sure about the rise in temperature, as mine seems to rise >1°C every day from 35,3 to 36,6°C, and that may then be normal for me, altho it seems more than usual).
Hardly any histaminey problems, without DAO & taking supps a bit late, but no experiments.

’Research’ today: None.

Lessons in self-care #231 Hmm, slogging my way thru paperwork & a bit of table tennis is better than self-discipline if I keep histamine down or what is today’s lesson
Reasons to be cheerful #238 Fun playing and landing a back-hand smash.

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 24, 2022, 2:10pm

2022-02-24, Thursday 10% - despite a bit of cheese

v1: Deep night, ‘easy’ phone call caused big flare of pain & sinuses. Breath-holding helped. Research on mast cells as connection between FM & MCAS. v2: 3rd cheese trial… seems OK today…

Triggers & resulting Symptoms

SLEEP (click for details): 8h31, up 4x (24') ✅, ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 80%/2 ❌. Awake and asleep at the same time from 7 on. But more like pre-jab#2, (the last hour light sleep).

cold shower p0 Sleep 23:15-
0:25 4’ 80%/2 p0 st1 drink fw2’ air sore throat → calendula, zombified sleep.
3:13 4’ 80%/2 p0 st1 drink fw1’ air slight sore throat, zombified sleep.
5:55 7’ 80%/2 p0 st1 drink fw1’ air very slight sore throat, zombified sleep. HWB
7:26 9’ 80%/2 p0 st1 drink fw1’ kind of cortisoly awake, but dead tired. Can’t take GABA cos I need supps without amino acids first. stomach burn → almond milk. What about some magnesium, as I’m not taking that atm? (but which?) Or shall I just get up altho I think another hour’d do me good?
20’’ 2nd shower cold and/or warm (nostrils)! HWB! Chatter: GABA-speck? SUPPS & AIR 1st!
7:00: Heating on!
-8:10
Sum: 45+8h10-(4+4+7+9=)24’ = 8h55 - 24’ = 8h31, up 4x (24’)

ACTIVITIES (aiming for 40% - well 20% - physical activity of pre-fibro) ➔ ACHE: Back exercises properly and with self-discipline, but very slowly, and not much “strength” for movement, despite a sort of ‘motor’, so perpetual slow movement. ➔ 70%/3. Phone call for a friend caused pain & sinuses ➔ 60%/4, so now rest, music, breath-holding ➔ 70%/3
(e.g. cycle , TT , meetings/social , mask , kids , work ➔ ?80%/2) ?
"HOW DO I LOOK?" 8:25 White & tired 10:20/:25 Same
ACTIONS ➔ PAINS: GI: 2 esophagus blocks the last 2 days. I’m often more sensitive to any pressure tho, usually I can prevent it by stopping eating and drinking a bit of fizz.
(e.g. lie, stand, loins, sit, arms up, neck, stiff, walk, cycle, 0xp1-2, GI, talk, mask.)

Treatments

Docs:

Factor VIII up: MCAS and CVD? Cardiologist. Hyperlipidemia from MCAS?? White Lips?
N-methylhistamine check to increase “hard facts” for MCAS. If not: Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or Leukotriene-E4.
I’ve decided I don’t need to check my old “Anti-P note” - I’d copied it and that should be enough.

WHB (3 rounds) 11:10 1’30’’ 1’40’’ 1’30’’ 1’50’
RIBOSE: ?

SELF-PHYSIO (click for details): 1h44 ✅ (enoiugh). Combine. List-prioritize: next. Been doing breathing exercises at night to get my nostrils freer without noting them the past 3-4 days.

Supps (Feb 12th: 31): Supp costs: ~344€/m. CHANGE: CoQ10/ubiquinone <150mg/d better for lp(a). Waiting for ordered pine bark, Cu, Zn, passionflower & rhodiola. Look for better honokiol. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, Sr 31125k.
(REGULAR as of Feb 12th (31 Cu, pine, pf, rho, Zn coming): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also contains L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Feb 15th (before: see the reference post)
/21:30! A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/22:10 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
Chamomile tea.
/23:00 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/03:15 B1 “01:00” PF#4
Heating on! Warm shower?
/07:30 B2 “07:00” +ALA+2x pine bark, (teeth)
/07:30 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/07:30 B4 “07:00” EGCg + Fev/MSM + Sily
/09:25 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO?
/09:25 C3 “MEAL” .5gC#1 2The2 (0NAC) -10:10
/12:30 C4 “11:00” (+2h/) gi#2 gly#1. Nd#? & Ellagic acid
1 DAO (D1) “13:00” 0psyllium cheese at 15:40
/15:50 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/17:50 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#?
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine:
Again sore throat like post-jab#1, sleep also, however not as long, awake and asleep from 7 on, more like pre-jab#2. Nausea still only occasionally, not much problems with cold/thermostat. 10:00 Phone call for a friend caused pain & sinuses. 11:00 burning itchy skin.
15:00 After two “better” days (10% instead of 5-10%) why not try cheese a 3rd time?!

’Research’ today:

Mast cells as connection between FM and MCAS and long-COVID:
Afrin, one of the docs researching & propagating the MCAS-diagnosis, believes long-COVID may have MCAS as a cause. I’m hesitant to believe everything he & the others say, as diagnosis & treatments are a bit complicated and vague (or rather pseudo-exact), but as long as no one can offer me anything better and it’s helping, I don’t care and am using it as a working hypothesis.

Fibro is said to be a common co-morbidity or ‘symptom’ of MCAS.

The immune system / mast cells (a type of white blood cell) would be a connection between the “autoimmune” hypothesis as one of the possible causes of fibro and the MCAS theory. Especially as mast cells have been shown to be increased 3-fold in the skin of people with fibromyalgia (which may however be an unimportant result of it, not a cause).

A researcher in Boston USA, Theoharides, is regularly looking into and touting the supp luteolin as a mast cell stabilizer for both FM and MCAS, e.g. 2019, for instance for brain fog in MCAS, FM and other conditions. (I’m actually using luteolin myself - pretty expensive tho.)

As Banfi et al 2020 explain, the nervous system and inflammation is definitely connected, but we don’t know how: So the central sensitization idea and the (auto)immune one may not be as far apart as it may seem?
Mastrangelo et al 2018 on mast cells & cytokines Low-grade chronic inflammation mediated by mast cells in fibromyalgia: role of IL-37 - PubMed
Theoharides et al 2019 on trying to inhibit mast cells in FM Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome - PubMed
Conti et al 2020 mast cells/cytokines Impact of mast cells in fibromyalgia and low-grade chronic inflammation: Can IL-37 play a role? - PubMed
Banfi et al 2020 on T cells in FM T Cell Subpopulations in the Physiopathology of Fibromyalgia: Evidence and Perspectives - PubMed
Theoharides et al 2021 on luteolin for long-COVID brain fog Long-COVID syndrome-associated brain fog and chemofog: Luteolin to the rescue - PubMed

New post on why and how to tell people how we feel here.

Lessons in self-care #232 Did quite a bit today, but kept everything to 30 mins with a lot of breaks, it was so natural that it didn’t seem “disabled”.
Reasons to be cheerful #239 A bit of cheese was OK today, so the flares were either the beans or “just” the jab.

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 25, 2022, 1:45pm

2022-02-25, Friday 5% - food triggered? PEA for FM & MCAS & lipids & bp & IBS.

Activity down again: cos of 1) slivers of cheese or 2) 3 slices of spelt bread, 3) too much (100g) raisins or 4) (200ml) soy yoghurt
Wondering if palmitoylethanolamide (PEA) might help get my mast cells under control. (Only slight evidence, but it also seems to decrease triglycerides, blood pressure and IBS, so I’ve ordered it.)

Triggers & resulting Symptoms

SLEEP (click for details): 8h45, up 3x (15') ✅, and ➔ Feeling 90% well, Ache 1 of 7 ✅, getting up: 80%/2 🧐. Taking a 4th 350mg passiflora at 6 was possibly too late, didn't help much either, so next I'll try taking whichever last one at 4.

cold shower p0 Sleep 23:00-
3:05! 5’ 90%/1 p0 st1 drink fw2’ air Slight skin itch-turnburn
3:25 5’ 90%/1 p0 st1 drink fw2’ LBU: phoenix, cold wash, HWB.
6:15 5’ 90%/1 p0 st1 drink fw1’ air
20’’ 2nd shower cold and/or warm (nostrils)! HWB! Chatter: GABA-speck? SUPPS & AIR 1st!
7:00: Heating on!
-8:00
Sum: 1h+8h-(5+5+5=)15’ = 8h45, up 3x (15’)

ACTIVITIES (aiming for 40% - well 20% - physical activity of pre-fibro) ➔ ACHE: Stool ➔ 70%/3 (quite often the case).
(e.g. cycle , TT , meetings/social , mask , kids , work ➔ ?80%/2) ?
"HOW DO I LOOK?" 10:20 Same as ever, white and tired. At doc’s not bad, and O2 95-98%.
ACTIONS ➔ PAINS: Bit of elbow → stretches & massage gun. Painfully sudden cramping stool → rest (food trigger?)
(e.g. lie, stand, loins, sit, arms up, neck, stiff, walk, cycle, 0xp1-2, GI, talk, mask.)

Treatments

Docs:

GP prescribed more of the antihistamine, couldn’t help with the Factor VIII or white lips.
Factor VIII up: MCAS and CVD? Cardiologist. Hyperlipidemia from MCAS?? White Lips?
N-methylhistamine normal. So: Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or Leukotriene-E4? I think I’d better check that with my allergologist. (This German site) seems to suggest that only the Leukotriene-E4 needs to be frozen, here that the 11-β-PGF2α is best refrigerated, but frozen or with the preservatives acetic acid, boric acid or sodium carbonate are acceptable.

WHB (3 rounds)
RIBOSE:

SELF-PHYSIO (click for details): 59' ✅ (Oooooh: getting lax?! O.o ;-)). Combine. List-prioritize: next.

Supps (Feb 25th: 27): Supp costs: ~344€/m. CHANGE: Passionflower, now pure, .350mg: 3/d? 19:00 and 21:00 was enough to sleep from 23:00 to 3:00! Cu, pine bark, rhodiola (& Zn) arrived. Look for better honokiol. Arg 0 since praps bad for lp(a)! RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, Mum, Mg Gly 50mg, Mg Mal 45mg, Nc 1*.5g, (Nd), (Rib), Pe, Ps, Se, Sr 31125k, Zn.
REGULAR as of Feb 25th (27, next: 28 incl. Cu, pine, Pf, Rho & Zn have arrived; leaving Zn for a time, while I get Cu up again): ALA .2g, B2 2*.1g, B12 5mg/2m, C 2*.5g, Cr 31g, DAO before meals, D3 1/w, EGCG (50%, incl. theanine?).5g, EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM), Ga: 4*.6g+.4g=~2.8g, Gi 3*?, Glu:~0.8g, Hon (2%).4g=8mg, Luteolin .2g, Ω3 5mg, P5 27mg, Pf 3-4.35g, pine bark 2*.5g, Pq 1, Q10 (ubq) !1*.1g/d, Qc 4*.5g/d, Rs (50%) 2*.4g, Ro 2*.2g(+B1 1.4mg), Sa .1g, Sily (80%)*.5g (+83mg L-cholin) , The .2g (+.15g polyphenols).
What-when-details: Updated Feb 15th (before: see the reference post)
/20:30 “17:00” - whoopsy…
/21:33 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/23:00 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
/23:00 Chamomile tea.
/03:05 ! A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/06:15 B1 “01:00” PF#4
Heating on! Warm shower?
/08:05 B2 “07:00” +ALA+2x pine bark, (teeth)
/08:05 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/08:05 B4 “07:00” EGCg + Fev/MSM + Sily
/09:30 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO?
/09:30 C3 “MEAL” .5gC#1 2The2 (0NAC)
/14:00 11:30 C4 “11:00” (+2h/) gi#2 gly#1. Nd#? & Ellagic acid
/14:00 1 DAO (D1) “13:00” 0psyllium
/16:15 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:50 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#?
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4 Gi: C2,C4,D3 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0Mg:C4.D3.A2) (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine:
20:00 Slightly burnt tongue feeling. Again at 23:00 but maybe after (cold) chamomile tea. Slight skin itch-turnburn at 23:00 and 3:05. Deep sleep without “23:00”-batch (so no antihistamine, maybe the new passiflora 2x?) Hard moving today, at the doc’s I needed minutes to get up, I was so stiff and exhausted. 16:15 Burning skin (after eating red cabbage with fennel, a little wholemeal rice, a little dark chocolate).

’Research’ today:
Ending yesterday’s stint on mast cells this letter to the editor by Cassisi, 2014/5, in answer to Pollack’s supporting comments on their article mentions neuro-inflammation, mast cells connecting nerve fibres & blood vessels, whilst microglia can contribute to and maintain pain by responding to (non-neuronal) CNS mast cells). These might be kept under control with cannabinoid receptor antagonists like the cannabimimetic palmitoylethanolamide reducing histamine-overreactions.
This makes me wonder what palmitoylethanolamide is, as “non-pharmaceutical” makes it sound like a supp.

Cassisi's full reply

Although many of the mechanisms and characteristics of fibromyalgia are well defined, its pathophysiology is still far from being fully understood (2). Mast cells probably play an important role in chronic pain (and therefore fibromyalgia) not only on the grounds of the histological evidence referred to by Dr Pollack (3, 4), but above all because of their importance in neuro-in- flammation. Neuro-endocrine immune stimuli can induce an increasing number of local mast cells and further the extent of their degranulating activity (5). Mast cells have a close anatomo-functional relationship with nerve fibres and blood vessels, and produce and rapidly release nerve growth factor (6). Microglia respond to the pro-inflammatory signals released by other non-neuronal cells, such as CNS resident mast cells, and it has been suggested that activated glial cells can contribute to spreading the sensation of pain and maintain its chronic status (7). The growing evidence of mast cell-glia communication opens up new perspectives for developing therapies that target neuro-inflammation by differentially modulating the activation of the non-neuronal cells that normally control both peripheral and central neuronal sensitisation (8).
The data concerning palmitoylethanolamide, a non-pharmacological analgesic, are promising insofar as its cannabimimetic action on mast cell receptors may reduce histamine-induced responses and modulate the onset and maintenance of pain (9, 10). We hope that further scientific contributions will clarify the relationship between mast cells and chronic pain, and the potential therapeutic role of cannabinoid receptor agonists in the treatment of fibromyalgia.

Continuing on palmitoylethanolamide

it seems good for pain: Biomarkers of response to alpha-lipoic acid ± palmitoiletanolamide treatment in patients with diabetes and symptoms of peripheral neuropathy - PubMed
The suggestion it might interact with lipid-lowering drugs on wikipedia made me look for its effect on lipids, blood pressure, and that seems good too, according to 1) neuroscientists at the Alzheimer’s Drug Discovery Foundation and 2) Pai et al. 2021, Am J Nephrol 2021;52:59–68.
Alzdiscovery: “PEA (300 mg twice daily) for 3 months …led to significantly improved flow-mediated vasodilation compared to placebo. This effect appeared to be due to improved peripheral endothelial function and its positive effect lasted longer than the duration of PEA intake. In spontaneously hypertensive rats, PEA treatment (30 mg/kg/day) for 5 weeks significantly reduced blood pressure by downregulating the angiotensin receptor 1 and angiotensin-converting enzyme (ACE)” and
Pai et al 2021: “However, while these lipid-derived mediators may counteract the effect of inflammation, they also activate fatty acid oxidation, resulting in reduced serum triglycerides, increased energy expenditure, and decreased body mass.”
Also good for IBS: Does Palmitoylethanolamide (PEA) Have Health Benefits? - SelfHacked
Now what about MCAS? Well, up to now I’ve found quite a few German sites saying: Yes. As far as English sites go, this one Palmitoylethanolamide for Neuro Inflammation - Sophia Health Institute came up which makes very offhand statements about using it in fibromyalgia and MCAS, altho it belongs to one Dr. Dietrich Klinghardt, who seems internationally renowned as a functional doc (but also in Germany etc.):

“Mast Cell Activation Syndrome (MCAS) is a very common symptom in chronic illnesses, and PEA supplementation can be of great benefit for reducing symptoms. PEA supplements are often combined with the plant pigment luteolin in a 10:1 ratio. Luteolin on its own is also used to calm mast cells, but the combination of PEA and luteolin has been shown to be more effective than either substance by itself (5).”
Firstly, MCAS (like any syndrome) is of course not a symptom . Whether it is common is still matter of debate, I think Afrin likes to assume it will be recognized that more and more. The referenced article (5) is not about MCAS, the abstract contains no reference to it, the full article costs 51$.
Then “PEA is popularly used for fibromyalgia”: Not true; if it had even been mentioned anywhere I’d’ve tried it; no reference given.
Bryant Rubright is the author of this misrepresentation, not Klinghardt himself.
Checking the fibromylgia track on healthrising about PEA “A recent study suggests it could be helpful in fibromyalgia.” and “Reduced PEA levels in the trapezius muscles of women with chronic widespread pain suggest PEA supplementation might be helpful in Fibromyalgia.” This paragraph explains the ‘search’-situation tho: “Why is PEA not better known in the West? PEA appears to been used in Italy and Spain for quite some time. Interest picked up in the Netherlands and Germany when a Netherlands distributor came on the scene. It’s hardly known in the U.S., although Palmitoylethanolamide For Pain reports that “many people” on the West coast of the U.S. as well as Australia and Canada are using it.”
I’ve decided to try PEA anyway. Anyone else?

Lessons in self-care #233 Lax on the self-physio today, praps better try tomorrow…
Reasons to be cheerful #240 Finding a “new” supp, PEA, let’s see

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 25, 2022, 3:11pm

My GP checked my blood oxygen with an oximeter today: 95%, after breathing deeply once: 98%. So it’s not that…

JayCS · February 26, 2022, 10:24am

2022-02-26, Saturday 5%, not 10% - Stiff and difficulty targeting switches and handles.

v2: 13:45 Extremely stiff today, need minutes to get up.
v1: watch similar food triggers (but less amounts, no soy y.). 22:00 after having procrastinated with self-treatments, I did a whole stint in a “revenge bedtime procrastination”, so my back wouldn’t hamper with my sleep. 11:30

Triggers & resulting Symptoms

SLEEP (click for details): 7h08, up 3x (19'), plus 55+52 Nidra/doze ✅, but ➔ Feeling ?90% well, Ache ?2 of 7 🧐, getting up: ?70%/3 ❌

cold shower p0 Sleep 23:15-
1:05 5’ 80%/2 p0 st1 drink fw2’ sore throat → calendula ess. air. B1.
3:31 9’ 80%/2 p0 st1 drink fw3’ elbows → twist-stretches air
5:32 5’ 80%/2 p0 st1 drink fw2’ dry mouth/stomach → almond milk
-6:42 3’ 80%/2 p0 st1 drink fw1’ own Y.N./doze
7:40 6’ 80%/2 p0 st1 drink fw1’ B2-4 Ally’s Y.N. cos of chatter. But sinuses too, GABA?
-8:38
Sum: 45+6h42-(5+9+5=)19’ = 7h27-19’ = 7h08, up 3x (19’), plus 55+52 Nidra/doze

ACTIVITIES (aiming for 40% - well 20% - physical activity of pre-fibro) ➔ ACHE: 70%/3 most of the day I spose, quite OK if I don’t move. (Cycling very short distance fun: 90%/1. )
"HOW DO I LOOK?" 11:00 face + lips a little reddish due to housework before
ACTIONS ➔ PAINS: Again: Not the problem!

Treatments

Docs:
Psychologist: I’ll bring this topic up on Tuesday, see what she says: My wife thinks I explain FM & MCAS to others too precisely and long to others. She’d prefer me to just say ‘soft tissue rheumatism’ and ‘histamine intolerance’ and leave it at that. She thinks they don’t understand me anyway and stop listening. (A part of this is that she doesn’t want to hear much about it.) I realized and said that I do that FOR MYSELF and not them, and DESERVE to do that, it’s the way I cope with it plus - if people ask me how I am - I can demonstrate to them that I’m coping well by understanding and acting on it; whilst other sufferers etc. may feel they want to moan or the lack of understanding of others which I neither have. When I realize that people don’t understand I try to reduce the complexity. And my table tennis mate just says: Ah, just talk to our other mates about that, they’re interested in medicine. My wife had to concede a bit, and realized that I don’t see my mates much nowadays and they just really are interested. So maybe that topic’s thru…

Factor VIII up: MCAS and CVD? Cardiologist. Hyperlipidemia from MCAS?? White Lips?
Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or Leukotriene-E4? (NHM OK)

WHB (3 rounds) 22:05 1’ 1’20’’ 1’20’’ 11:00 (doing the exercise by sight and listening and writing other things…) 1’ 1’30’’ 1’40’’ (why is it always less at the moment?)
RIBOSE: ?

SELF-PHYSIO (click for details): 3h33 ✅. Combine. List-prioritize: next.

Supps (Feb 25th: 29): Supp costs: ~344€/m. CHANGE: Re-order ALA. Passionflower .35g 3/d? Pine bark, Cu, rhodiola (& Zn) arriving. Look for better honokiol. Arg 0 since praps bad for lp(a)! RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, Mum, Mg Gly 50mg, Mg Mal 45mg, Nc 1*.5g, (Nd), (Rib), Pe, Ps, Se, Sr 31125k, Zn.
REGULAR as of Feb 25th (29 incl. now Cu, pine, Pf, Rho, not Zn during Cu): ALA .2g, B2 2*.1g, B12 5mg/2m, C 2*.5g, Cr 31g, Cu 1x, DAO before meals, D3&K2 1/w, EGCG (50%, incl. theanine?).5g, EllagicA .2g (+43mg vit. C), Fev .4g (+.2g MSM), Ga: 4*.6g+.4g=~2.8g, Gi 3*?, Glu:~0.8g, Hon (2%).4g=8mg, Luteolin .2g, Ω3 5mg, P5 27mg, Pf 3-4.35g, pine bark 2*.5g, Pq 1, Q10 (ubq) !1*.1g/d, Qc 4*.5g/d, Rs (50%) 2*.4g, Ro 2*.2g(+B1 1.4mg), Sa .1g, Sily (80%)*.5g (+83mg L-cholin) , The .2g (+.15g polyphenols).
What-when-details: Updated Feb 15th (before: see the reference post)
/20:10 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/21:55 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
/21:50 Chamomile tea.
/23:15 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/01:05 B1 “01:00” PF#4
Heating on! Warm shower?
/7:40 B2 “07:00” +ALA+2x pine bark, (teeth)
/7:40 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/7:40 B4 “07:00” EGCg + Fev/MSM + Sily
/09:00 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn 1xHon! DAO? +Cu
/09:00 C3 “MEAL” .5gC#1 2The2 (0NAC)
Sat 26th: vit. D3. Chamomile tea didn’t help the sinus burn.
/11:30 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
/12:35 GABA-speck: 150mg sublingually.
1 DAO (D1) “13:00” 0psyllium
/~15:00 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:30 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#?
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, Gi: C2,C4,D3 Qc: A2.A3.B3.D4 Ro:B2,D4 Rs:B3,D4 SINGLE: A2:P5 A3: Luteolin A4: Rup! B2: ALA+2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:Cu(0Zn)&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.

(0x2Gly0x2Mal: C4.D3.A2) (B2:0mu) (0Nc: A3, B1,C1,C3,D2) (5NADH if nec.) (0 Nia) (D1:0Pe) (A2:0Se) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine:
Lots of sinus burning in the morning, even after eating and supps. Yesterday’s food? Cheese slivers, spelt bread, raisins… Blowing nose helps clear the nose, but not the burning (and headache and nausea). Try breath-holding… Bit better, but not gone. Then GABA? After C4-batch: 12:35, about 150mg → 13:50 sinuses another bit better.

’Research’ today:
Reading up a bit in Afrin’s big fat book Never Bet Against Occam. The cases are a bit boring, it’s so individual they’re far away from ‘me’, but there’s a big part at the end where I can look up things like Factor VIII and triglycerides. What he says about the anti-inflammatory side-effects of statins increases the case for atorvastatin again.
But the interaction between atorvastatin and rupatadine is a problem: https://www.medicine.com/drug/atorvastatin/hcp: " Rupatadine: May enhance the adverse/toxic effect of HMG-CoA Reductase Inhibitors (Statins). Specifically, the risk for increased CPK and/or other muscle toxicities may be increased. Monitor therapy" My CPK is already increased, however I haven’t yet experienced muscle pain from statins, if that is what this is referring to. C(P)K = Creatin(phospho)kinase, an enzyme in brain as well as muscles. Reasons for its increase: Statins, infection, immobilization, lack of blood supply to a particular limb. Its breakdown in the kidneys causes myoglobin, which is attacked by white blood cells.
High CPK Levels Causes, Symptoms, Side Effects, Treatment by Dr Himanshi
Hoffman warns about quercetin and EGCg, cos the COMT++ enzyme can cause problems (gene). Praps before I do a gene test for this I should try a few days without the 2? But the symptoms I should be looking for are anxiety, insomnia and pain, and I have absolutely no anxiety, my better sleep is the only positive thing about the jab-sfx and my pain is probably caused by the jab and isn’t my biggest problem.

Lessons in self-care #234 Quite a bit of housework, but breaks every 2-3 minutes, trying not to overdo it.
Reasons to be cheerful #241 Still getting lots done, piles down.

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 27, 2022, 1:49pm

2022-02-27, Sunday 8% - getting things done, moving slowly…

Triggers & resulting Symptoms

SLEEP (click for details): 8h10 up 5x (56') ✅, ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐

cold shower p0 Sleep 23:25-
0:45 10’ 80%/2 p0 st1 drink fw1’ B1
2:06 3’ 80%/2 p0 st1 drink fw1’
4:11 5’ 80%/2 p0 st1 drink fw1’ air HWB
4:28 3’ 80%/2 st1 fw1’ gun for LBU
5:34 35’ 80%/2 st1 fw1’ GABA 200mg (atho wasn’t really chatter, it was dream sleep, but getting up too much tonight, need one last stint) 6
-8:31
Sum: 35+8h31-(10+3+5+3+35=)56’ = 9h06-56’ = 8h10 up 5x (56’)

ACTIVITIES (aiming for 40% - well 20% - physical activity of pre-fibro) ➔ ACHE: Doing a bit of housework moving very slowly is OK, so I’ll say ➔ 80%/2. Double antihistamine? Nope. Don’t feel it’s right today. 30’ cycle walk meant only 10’ service was possible, as the break of 40’ in between was far too short. 70%/3.
(e.g. cycle , TT , meetings/social , mask , kids , work ➔ ?80%/2) ?
"HOW DO I LOOK?" White face & lips, but when I try to take a pic, both always come out reddish…
ACTIONS ➔ PAINS:

Treatments

Docs:

Psychotherapist: Do I talk too “medical”? (details on Saturday’s entry)
Cardiologist: Factor VIII & lipids up: MCAS and CVD? White Lips, blue fingers? Atorvastatin vs. rupatadine?
Allergologist: Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or - Leukotriene-E4? (NHM OK)
GP: Check magnesium level instead of just stopping it.

WHB (3 rounds) 3x1’30’’
RIBOSE:

SELF-PHYSIO (click for details): 112'... ✅. Combine. List-prioritize: next. 3 Acupressure points for pain, stress and energy helped a bit, so I'll be repeating them several times a day.

aloe vera 1’, hand-exerciser 3’, twist-stretch 5’, airing 4x2’, cold shower (10’), cream fc/ey/hd/ft 3x1’, teeth 2x2’, HWB 2x3’, breath exercises 4’, facetime 2x1’, Timing, hunchback-pillow 5’, palpate 1’, belly 3’, back 8’, massage gun 5’, breath-hold 11’, left foot on/under right knee/cross-legged 33’,
Combine: next? workout 7’, horse stance 1, something new?
Pain, Stress, Energy: 3 Common Acupressure Points Everyone Should Know (Pain, Stress, Energy) - YouTube
Stiff: https://www.youtube.com/results?search_query=stiffness+points, e.g. Leg Pain & Stiffness Acupressure Points - YouTube
Tailbone: https://www.youtube.com/results?search_query=acupressure+tailbone+pain, e.g. Acupressure Point For Tail Bone Pain - Instant Tail Bone Pain Relief - YouTube

hair/nails 3’, neck 1+ 2’, neck 2 4’, plantar/calf stretch 5’, loins 5’, yoga/stretching 5’, jolt-jump 1’, marionette-hang 1’, shaking dance 1’, acupressure 6’, bent leg fall 1’’, Y. Nidra 20’.
Breathing: https://www.youtube.com/results?search_query=acupressure+breath e.g. How to improve your breathing with this acupressure point - YouTube Acupressure Breathing Technique - YouTube Lungs: Mandell: AWAKEN YOUR LUNGS IN 30 SECONDS - Dr Alan Mandell, DC - YouTube & 😤 PUSH HERE AND YOUR LUNGS WILL THANK YOU - Dr Alan Mandell, DC - YouTube Joe Dispenza Breathing Technique Demonstration - YouTube https://www.youtube.com/results?search_query=+Joe+Dispenza’s+breathing+technique
Circulation: How to Improve The Blood Circulation in Your Legs in Just 3 minutes! - YouTube
Eyes tired https://www.youtube.com/results?search_query=acupressure+tired+eyes, e.g. Massage and Acupressure for Tired Eyes - Massage Monday #109 - YouTube
Face Feldenkrais: Feldenkrais® Facial #1: Relax Face, Jaw and TMJ tension - YouTube Feldenkrais Free Your Face - YouTube
Groin: 2, 5 and 6 may be best for me: How to Relieve Groin Muscle Pain in 30 SECONDS - YouTube
Legs weak: https://www.youtube.com/results?search_query=acupressure+weak+legs e.g. Pain: Acupressure Points For LEG PAIN || Leg WEAKNESS || NUMBNESS In Legs || TINGLING In Legs || SCIATICA - YouTube. best acupressure points for leg & thigh muscles , pain , weakness , numbness , strength , leg pain - YouTube
Reflux: https://www.youtube.com/results?search_query=acupressure+points+for+esophagitis e.g. The 4 minute natural trick to prevent acid reflux in the oesophagus - YouTube https://www.youtube.com/results?search_query=esophagus+block
Skin itchy: https://www.youtube.com/results?search_query=acupressure+itchiness, e.g. How to relieve itchy skin naturally - 3 simple steps - YouTube, Acupressure points for skin allergy, hives, rash or eczema - YouTube, Acupressure For Itching - YouTube
Stomach burn Acupressure Points for a Burning Stomach - YouTube
TCM: "It Takes Seconds" | Master Chunyi Lin on "The Most Powerful Chinese Medicine" - YouTube, qigong: "If You DO IT PROPERLY, Every Cell in Your Body Will Be Fixed" | Master Chunyi Lin - YouTube
Vagus: Vagus Nerve Massage For Stress And Anxiety Relief - YouTube
(usually not necessary): calendula/tea tree x1’, foot bath 15’, gums 2x30’’, V ‘, mirror 2’, RR x2’, nux vomica 1’.

Supps (Feb 25th: 29): Supp costs: ~344€/m. CHANGE: Passionflower .35g 3/d? Pine bark, Cu, rhodiola (& Zn) arrived. Rhodiola now 2x.3g 30' before meals. Look for better honokiol. Quercetin and EGCg may cause RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, Mum, Mg Gly 50mg, Mg Mal 45mg, Nc 1*.5g, (Nd), (Rib), Pe, Ps, Se, Sr 31125k, Zn.
REGULAR as of Feb 25th (29 incl. now Cu, pine, Pf, Rho, not Zn during Cu): ALA .2g, B2 2*.1g, B12 5mg/2m, C 2*.5g, Cr 31g, Cu 1x, DAO before meals, D3 1/w, EGCG (50%, incl. theanine?).5g, EllagicA .2g (+43mg vit. C), Fev .4g (+.2g MSM), Ga: 4*.6g+.4g=~2.8g, Gi 3*?, Glu:~0.8g, Hon (2%).4g=8mg, Luteolin .2g, Ω3 5mg, P5 27mg, Pf 3-4.35g, pine bark 2*.5g, Pq 1, Q10 (ubq) !1*.1g/d, Qc 4*.5g/d, Rs (50%) 2*.4g, Ro 2*.3g(+9mgC), Sa .1g, Sily (80%)*.5g (+83mg L-cholin) , The .2g (+.15g polyphenols).
What-when-details: Updated Feb 15th (before: see the reference post)
/21:10 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/21:10 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
/23:05 Chamomile tea.
/23:05 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/00:45 B1 “01:00” PF#4
Heating on! Warm shower?
/08:35 B2 “07:00” +ALA+2x pine bark, (teeth) +!Ro
/08:35 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/08:35 B4 “07:00” EGCg + Fev/MSM + Sily
/09:30 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu or Zn 1xHon! DAO?
/09:30 C3 “MEAL” .5gC#1 2The2 (0NAC) Essen -11:30. & -12:45
/13:45 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
1 DAO (D1) “13:00” 0psyllium
/14:45 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/17:55 C4 = xEllagic Acid 1h after meal
/17:55 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#? +!Ro
eve:
/19:50 A1/2
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4 Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Ro:B2,D4 Rs:B3,D4 SINGLE: A2:P5 A3: Luteolin A4: Rup! B2: ALA+2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:Cu(0Zn)&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine:
Reduced histamine foods Saturday evening, only 4 tiny slivers of cheese, 10 raisins, a 100ml soy yogurt. If that doesn’t help I’ll double the antihistamine tomorrow late morning. Didn’t seem necessary, unless it can improve pain & fatigue, so didn’t double it and tried a similar amount of cheese, spelt bread, reaisins and a bit less soy yogurt.

’Research’ today:
Only bits’n’bobs, forum work.

Lessons in self-care #235 Slow and pausing like a tortoise/turtle all day.
Reasons to be cheerful #242 Quite well inside today.

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

JayCS · February 28, 2022, 6:58am

2022-02-28, Monday 10% - cos I kept it slow again , & low histamine

Triggers & resulting Symptoms

SLEEP (click for details): 8h35, up 4x (13') ✅, ➔ Feeling 80% well, Ache 2 of 7 🧐, getting up: 80%/2 🧐, but very tired, so back to bed a bit.

cold shower p0 Sleep 22:30-
23:50 8’ 80%/2 p0 st2 drink fw2’ dream. air. loose stool. A4
2:05 3’ 80%/2 p0 st2 drink fw2’ dream. air. B1
4:48 3’ 80%/2 p0 st2 drink fw2’ dream. air.
6:20 4’ 80%/2 p0 st1 drink fw2’ dream. air.
7:00: Heating on!
-7:18
Sum: 1h30+7h18-(3+3+3+4=)13’ = 8h48-13 = 8h35, up 4x (13’)

ACTIVITIES (aiming for 40% - well 20% - physical activity of pre-fibro) ➔ ACHE: Starting tired. But kept activity slow, with sufficient breaks, always under the limits, so seemed to stay ➔ 80%/2.
(e.g. cycle , TT , meetings/social , mask , kids , work ➔ ?80%/2) ?
"HOW DO I LOOK?" 9:45 OK-ish
ACTIONS ➔ PAINS: Big esophagus block yesterday evening, eating a bit too fast (chewing well tho), it’d seem it blocks once there is too much food coming up after, it needs more time to let it pass. Bit strenuous cleaning caused a small back muscle to strain: Zero tolerance, no further housework that involves that today, 5’ massage pistol helped on first try, I’ll repeat if necessary tho.

Treatments

Docs:
Psychotherapist - Tuesday: Do I talk too medical? (details on Saturday’s entry)
Cardiologist - Thursday: Factor VIII up: MCAS and CVD? Hyperlipidemia from MCAS?? White Lips? Blue fingers. Atorvastatin vs. rupatadine?
Allergologist - phone: Prostaglandin D2 or 2,3-Dinor-11beta-prostaglandin F2 alpha or Leukotriene-E4? (NHM OK)
GP - next Monday: Mg level instead of just stopping it?
Chinese Acupuncturist: next Tuesday.

WHB (3 rounds) ? 1’10’’ 1’40’’ 2’ 1’30’’
RIBOSE:
Pain, Stress, Energy acupressure: 3 Common Acupressure Points Everyone Should Know (Pain, Stress, Energy) - YouTube 3x#1, 1x

SELF-PHYSIO (click for details): 1h53 ✅. Combine. List-prioritize: next.

Supps (Feb 25th: 29): Supp costs: ~344€/m. CHANGE: Passionflower .35g 3/d? Pine bark, Cu, rhodiola (& Zn) arrived. Rhodiola now 2x.3g 30' before meals. Look for better honokiol. Quercetin and EGCg may cause RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, B3/Nia, Mum, Mg Gly 50mg, Mg Mal 45mg, Nc 1*.5g, (Nd), (Rib), Pe, Ps, Se, Sr 31125k, Zn.
REGULAR as of Feb 25th (29 incl. now Cu, pine, Pf, Rho, not Zn during Cu): ALA .2g, B2 2*.1g, B12 5mg/2m, C 2*.5g, Cr 31g, Cu 1x, DAO before meals, D3 1/w, EGCG (50%, incl. theanine?).5g, EllagicA .2g (+43mg vit. C), Fev .4g (+.2g MSM), Ga: 4*.6g+.4g=~2.8g, Gi 3*?, Glu:~0.8g, Hon (2%).4g=8mg, Luteolin .2g, Ω3 5mg, P5 27mg, Pf 3-4.35g, pine bark 2*.5g, Pq 1, Q10 (ubq) !1*.1g/d, Qc 4*.5g/d, Rs (50%) 2*.4g, Ro 2*.3g(+9mgC), Sa .1g, Sily (80%)*.5g (+83mg L-cholin) , The .2g (+.15g polyphenols).
What-when-details: Updated Feb 15th (before: see the reference post)
/20:00 A1/2 “19:00” PF#1 Cr#1 0mal#1+2 P5P(0Se) PQQ Ω3 & Qc. Meal: DAO.
/22:00 A3 “21:00” PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +0NAC!
/22:00 Chamomile tea.
/23:50 A4 “23:00” PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
/02:05 B1 “01:00” PF#4
Heating on! Warm shower?
/07:20 B2 “07:00” +ALA+2x pine bark, (teeth) +!Ro
/07:20 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/07:20 B4 “07:00” EGCg + Fev/MSM + Sily
/10:00 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Cu or Zn 1xHon! DAO?
/10:00 C3 “MEAL” .5gC#1 2The2 (0NAC)
/12:00 C4 “11:00” (+2h/) gi#2 0gly#1. Nd#? & Ellagic acid
0 DAO (D1) “13:00” 0psyllium - hardly anything histamine cos of quinoa. (little bit of dark choc.)
/16:30 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:40 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#? +!Ro
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 3x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4 Gi: C2,C4,D3 0x2Gly0x2Mal: 0C4+0D3,0A2 Qc: A2.A3.B3.D4 Ro:B2,D4 Rs:B3,D4 SINGLE: A2:P5 A3: Luteolin A4: Rup! B2: ALA+2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:Cu(0Zn)&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine: Pretty OK, I feel more and more it does make a difference
’Research’ today: Nope. Preferred writing reviews of my online pharmacies to keep them on their toes (it helps, I’ve found). Actually wanted to read Afrin’s MCAS book, let’s see if I can still find time.

Lessons in self-care #236 Medium self-discipline is good. New acupressure points.
Reasons to be cheerful #243 Quite a bit of paper- & housework & work (mail & phone)

1st Jab-sfx-summary, last edit: Feb 7th.
My blog references, e.g. abbreviations, supp chart/overview
My “How to symptom track & trigger hunt”
Next up…: Summaries & finishing off treatment list…

Topic		Replies	Views
∑ JayCS's Fibro Blog - summary Complementary Therapies	1	892	May 15, 2021
Unsure this is Fibro...needing reassurance Symptoms & Treatments	6	2331	April 1, 2016
Diagnosed 3 months ago Introductions	3	2494	July 22, 2016
Spotlight on our member: JayCS from the Living with Fibromyalgia community General	1	196	July 8, 2022
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JayCS’s Fibro Blog

2022-02-12, Saturday 20% - tomorrow is the day that shows where it’s going to - … today “OK”…

Triggers & resulting Symptoms

Treatments

2022-02-13, Sunday 20% “+10% cortisol” - Lots of music and antihistamine details

Triggers & resulting Symptoms

Treatments

2022-02-14, Monday - 10% better sleep, but not particularly good, night or day.

Triggers & resulting Symptoms

Treatments

2022-02-15, Tuesday - 15% = less than Saturday (not counting: Sunday overdoing it and Monday paying for it) and Friday, which were less than Thursday…

Triggers & resulting Symptoms

Treatments

2022-02-16, Wedneday - 15% - hurting, but happy and getting on.

Triggers & resulting Symptoms

Treatments

2022-02-17, Thursday 15-20% - Brain chatter stopping sleep at 6 again proves I do need the passiflora again. So a cortisol day, but used it to get things done (about 150 tabs and 50 mails), and kept table tennis down to 2 games. Suddenly tired at 19:30… calls for self-discipline…

Triggers & resulting Symptoms

Treatments

2022-02-18, Friday 15% - OK-ish despite pain, paperwork; interesting ‘research’

Triggers & resulting Symptoms

Treatments

2022-02-19, Saturday 15% - lively night, good day, but even doing hardly anything was too much…

(v1:) I’ve been using two sets of percentages, the one since Oct21 is my maximum activity level, which I’m now using to say in absolute terms how well I’m doing, not feeling, e.g. yesterday 15%. All my % / pain points are often independent of one another:

Triggers & resulting Symptoms

Treatments

2022-02-20, Sunday 15% → 10% → 5% - night OK, day bad: food or I think jab#2.

Triggers & resulting Symptoms

Treatments

2022-02-21, Monday 15-10% -

Triggers & resulting Symptoms

Treatments

2022-02-22, Tuesday 10%-5% - hard to move: stiff, & sinuses too: jab#2 on day 12 now in full effect!

Triggers & resulting Symptoms

Treatments

2022-02-23, Wednesday 10% - Sacrificed self-discipline for a major bit of paperwork - worth it. So were the really bad days cheese & beans after all?

Triggers & resulting Symptoms

Treatments

2022-02-24, Thursday 10% - despite a bit of cheese

Triggers & resulting Symptoms

Treatments

2022-02-25, Friday 5% - food triggered? PEA for FM & MCAS & lipids & bp & IBS.

Triggers & resulting Symptoms

Treatments

2022-02-26, Saturday 5%, not 10% - Stiff and difficulty targeting switches and handles.

Triggers & resulting Symptoms

Treatments

2022-02-27, Sunday 8% - getting things done, moving slowly…

Triggers & resulting Symptoms

Treatments

2022-02-28, Monday 10% - cos I kept it slow again , & low histamine

Triggers & resulting Symptoms

Treatments

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