JayCS’s Fibro Blog

Symptoms & Treatments
712

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: :white_check_mark:

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) :one: 14:45 3x1’30’’ :trophy:
RIBOSE: :one: 16:30 2g

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

:white_check_mark: 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?

:x: 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’,

Breathing: https://www.youtube.com/results?search_query=acupressure+breath e.g. https://youtu.be/7_nu5NP8Sdk https://youtu.be/k0RdtszE12c Lungs: Mandell: https://youtu.be/ai7fRWnD3hM & https://youtu.be/BaFosbmCYWQ https://youtu.be/0prKElQzGu4 https://www.youtube.com/results?search_query=+Joe+Dispenza’s+breathing+technique
Circulation: https://youtu.be/X0gUg09Gcho
Eyes tired https://www.youtube.com/results?search_query=acupressure+tired+eyes, e.g. https://youtu.be/qvvDanzzsaQ
Face Feldenkrais: https://youtu.be/cGGjXKJvw-U https://youtu.be/C4yVO7oPJcc
Groin: 2, 5 and 6 may be best for me: https://youtu.be/6sLC_x1tUT0
Legs weak: https://www.youtube.com/results?search_query=acupressure+weak+legs e.g. Pain: https://youtu.be/oaUUI8jXb38. https://youtu.be/BEuBYjGkfK4
Pain, Stress, Energy: https://youtu.be/YP1xt62u5r4
Reflux: https://www.youtube.com/results?search_query=acupressure+points+for+esophagitis e.g. https://youtu.be/ukjDvQzij8Y https://www.youtube.com/results?search_query=esophagus+block
Skin itchy: https://www.youtube.com/results?search_query=acupressure+itchiness, e.g. https://youtu.be/wfGhIX1RX8M, https://youtu.be/_zRRN33xWVY, https://youtu.be/TxQSSMeTJc0
Stiff: https://www.youtube.com/results?search_query=stiffness+points, e.g. https://youtu.be/kQCzk2TxqNo
Stomach burn https://youtu.be/-W-_dJiwgNU
Tailbone: https://www.youtube.com/results?search_query=acupressure+tailbone+pain, e.g. https://youtu.be/zvTBcYVaQdw
TCM: https://youtu.be/DsU9ydJS-1c, qigong: https://youtu.be/qWfXJ5l3jPo
Vagus: https://youtu.be/LnV3Q2xIb1U
:question:: foot bath 15’, gums 2x30’’, V ‘, mirror 2’, RR x2’, nux vomica 1’.

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.