2023-12-26 Tuesday
Summary:
- LDN (2mg):
: Energy ?30% - stayed under limits tho - no workout altho no TT; but walking / cycling 30’ , also far under limits. - DAO: 0x: 3-5 (not sure) walnut halves 9:30 , the last ones started the tongue hurting a tiny bit at 9:45. More from the afternoon on after 100g of baked beans, but not too bad and gone Wednesday morning.
- Where’s B5 gone??
- Drinking only 2L/d I now think is the LDN.
- My virus in September may have been a hantavirus from our bank vole, which would mean I’m immune now.
- ‘Research’: Partly inflammatory effect of low dose NAC doesn’t seem worrying to me.
- Cheer: A blood-red cranesbill (geranium) is the first full ‘spring’ blossom of the year. Guinea pig fun! Bank vole in cellar!
(V)LDN: Dec 11th- 2mg. (Slowly up from Oct 1st ~0.07mg.) Forgetting Dec 23rd caused big energy dip immediately, so there's no drug level, it works day to day. Drinking only 2L/d I now think is the LDN. Click for details on effects and dosage...
(It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly Dec drinking only 2L/d, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense 
. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th: LDN 1x2mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
CVD med effects?: ATORVASTATIN 16th- 0mg ✅ - postponing further trials. BP ✅. Click for details...
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
1) MAIN ISSUES: Talking 10' ➔ 70%/3 ❌, music 2x5' ➔ 70%/4 ❌, white lips 70-100% ❌, no TT available, moving ➔ 80%/3 (✅), SO post exertional malaise (✅), "post postural ache", "PPA" (✅), stiffness ✅, exhaustibility "70%" ✅ and sleep 8h10 (1h deep dozing) ✅ ("PPA": 2-3 (✅)), energy profile: medium, with "4h rest", 0h very slow, 2h slow, 9h medium, 1h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but improvement only if I stop atorvastatin for a few days.... Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 8h10, up 3x (15'), last hour dozing, cos too late in bed. ✅, everything else OK ✅ (22 issues under control, see template), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 6 0:20-8:45 - ?1h dozing 8h25 Sum: h+h-()’ = 8h25-15’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: 26th: 3-5 half walnuts seemed OK, even without DAO, but after 100g baked beans a few hours later tongue burning (right side this time, left side a bit, not tip). Click for list...."
(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
(2) Jan: TCM recommendations for a few weeks took my appetite.
(3) Feb: ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 7th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(X) Improvements (Sep 12th): Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night .
(X) Intermediate status: These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(10) Sept: 1) Further painful bladder exam injured (‘screaming’ 3d), 2) scarred me (4th-), 3) caused UTI (2x3d). 4) CoV-type infection (12th 10d) (hantavirus from bank vole?), 5) binge work stress (mid-month for 4 weeks), 6) abdomen pains, 7) listening to music painful (24th), 8) Harley needs feeding up cos of 3 types of bad teeth starting Aug/Sept, 9) wife wrought-up Sept. 10) 18th: CVD meds problems, so stopped again for the time being. (27th: New GP helpful.).
(11) Oct: (V)LDN helping a “lot”, 1) 17th: Complex filling - only 1-2 days recovery. 2) 23rd/24th: CVD meds dreadful, so 26th re-started with BP specks up to 4mg spread, with only slight side effects.
(12) Nov: 1) 13th atorvastatin even specks difficult, 28th: 1+1+2mg caused insomnia, 29th 1mg OK again.
(13) Dec 1) 7th: One distracted moment let Stuey fall from sofa, breaking his front teeth off, so 2) now 2 guinea pigs to feed up. 3) 8th: energy dip in the mornings, probably atorvastatin 4) 9th: Shop coupon 5) Boss mail. 6) Post postural Ache/Pain at night off and on partly from “too good” sleep. 7) 13th/14th: Histamine reactions: Runny nose, headache and burnt tongue 14h later (lasting till Fr9:00 and counting) after 2x DAO before 200g baked beans and yoghurt. But 18-20th: DAO helping with walnuts (even a chip without DAO before?!). 8) 21st: Harley’s lost 7% in one week. 9) 26th: 3-5 half walnuts seemed OK, even without DAO, but 150g baked beans a few hours later caused tongue burning (right side this time).
3) DOCS: CARDIO (Dec 11th): Rosuvastatin? ONCO: Appt. with onco#2 Jan 8th. (Check lymph nodes, liver and spleen sizes onco#1 wrote.) Click for details.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
4) UNDER CONTROL ✅ (attention necessary (✅)) - 26th: Check where B5 has disappeared to! Dec 22th/23rd: Stopping ginkgo caused hearing loss and tinnitus on the right ear, plus balance problems and shakiness for 15h, like after stopping in hospital in August. Drinking only 2L now, less pee: from LDN?? Supp costs seem down to 350€ from taking less and getting them cheaper. Dec 18th-20th: 2xDAO worked for half a walnut 4x and a chip of one without DAO once, but 13th only 10% for 200g baked beans. Run out of 5 supps and not needing apigenin for sleep....
1) GI, pee, local pains, weather, dry mouth well under control: Details...
except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth better with salivating technique(s) (). Drinking only 2L now, less pee: LDN?
2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Dec 2nd (1) & 3rd (1), Nov 20th(?) (1,) Nov 13th (1), 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of 2022. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Dec 22nd: Run out of ellagic acid & feverfew since Nov23, ginkgo & rhodiola since Dec23, honokiol since mid-Dec, stopping ginkgo then caused hearing/tinnitus/balance problems for 15h Dec 22nd/23rd, so got new, for once from a local shop in good quality, organic, as well as cheap. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. From Dec 11th: LDN 2mg mornings. Nov 4th on: nattokinase 1x0.1g, from 15th 2x0.1g. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd.
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps Dez 24th: 28 supps (was 40) costs 353€/m (was 435€/m) +20€/m cps. Dec 22nd/23rd: Running out of ginkgo caused tinnitus etc. like in August, but found a better cheaper source. Haven't been needing apigenin for sleep recently. And not taking B2 for a while. Also realized I haven't been taking B5, but why? From Nov 4th on: nattokinase 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
‘Research’ today**
Augmented NAC? Or re-visit NAC at all?
After going thru my notes, experiences, a Peers talk too, and the aNAC website, it appears to me that aNAC is not at all different in quality, just it’s processed to work stronger, as the name says. That to me explains better why Tina Peers recommends NAC first, then aNAC.
I can’t exclude my extreme pain having been a detox reaction. However it may also have been extra histamine secretion, as said in studies like this Histamine secretion induced byN-acetyl cysteine | Inflammation Research. And that’s how it felt. Not sure if that is the same - that would mean getting rid of the spike protein increases histamine (in my case). The detox reaction Tina Speers mentioned in the Lorrie Rivers webinar was going red in the face. That’d be very different to mine.
Unfortunately, taking binders doesn’t work for me: I take supps around the clock, incl. GABA at night, and these then would be neutralized. Also my stomach and gut doesn’t tolerate them. If I did, I’d be taking them for lipids.
Apart from that, I’d have no problem pushing thru detox reactions. But generally I’m skeptical that they are right for my body, as I’ve never had positive experiences with them.
For Covid as well as for post vac syndrome (PVS) the spike protein itself seems to be the main explanation so far. The excipients (esp. PEG and polysorbate 80), are another, but I’d think those would be more short term, like my reaction to my statin tablets for a few hours. My PVS tho is lasting for months, so it’d have to be something that stays in me that long - Tina Peers mentions “15 months”.
Not just aNAC for the spike protein, many more things than that have been recommended for it, incl. by Tina Peers:
From Lorrie Rivers’ webinar:
“Dr. Been” recommended improving sleep, intermittent fasting esp. if brain fog, massaging the mastoid process behind the ear (downwards) and similar, resveratrol, deep tissue massage, methylene blue (except with SSRIs), early sun but then more red and near-red light, LDN, fluvoxamine/Luvox, fragrant plants.
Tina Peers mentioned that it reduces serotonin (which explains why increasing GABA from 2.4 to 4g/d helped me) and recommended low histamine diet, antihistamines, vitamins and minerals, mast cell stabilizer, quercetin and ketotifen, Low Dose Naltrexone, no sugar, no processed foods, intermittent fasting: no breakfast, sauna, far-infrared light, resveratrol, cold showers, cold water swimming, melatonin, quercetin, → metformin, ivermectin in some (Dr. Been says no), organic (and B vitamins, omega 3, quercetin, vit. C).
Thomas Levy: Quite a lot about oral health, and for that high dose intravenous vitamin C, ozone dialysis, methylene blue, photodynamic irradition with red light therapy to further activate methylene blue, HBOT and more.
Ozone dialysis and HBOT reminds me of the “Cyprus protocol” of HELP apheresis, blood washing with extras added in. This apheresis is being used quite a lot in Germany.
Of these I’ve tried almost everything. A lot have helped a little, quite a few I don’t tolerate at all. What’s helping most since Oct 1st is LDN, for the first time, and immediately, and by far, and decimated side effects by starting very low. I’m still at 2mg, and doing well, so got a way to go till 4.5mg, if I ever get that far. My energy is up from 10-15% for almost a year to stably around 30%, that’s where I was before the jabs, plus some fibro symptoms also better. So whilst I’m taking it, it’s reversing most of the jab reactions.
So will I be trying NAC again or even aNAC? I doubt it’s a cure all. If it really helps to get the spike out, then it’d be more a cure than the LDN. Cos I forgot to take that for a day and a pretty big setback, so up to now it seems to be managing, but not curing yet. So I’m considering NAC (first) when I’ve found the LDN endpoint.
Would I recommend taking NAC or aNAC? I’d start with NAC and see how that goes. Like Tina Peers recommends.
Low dosing NAC may cause inflammation on a certain level, but I think I’ll still try that first, rather than immediately getting the pain symptoms again I had after the jabs.
Low dose NAC was studied in 2014 by Ohnishi et al: Long-Time Treatment by Low-Dose N-Acetyl-L-Cysteine Enhances Proinflammatory Cytokine Expressions in LPS-Stimulated Macrophages - PMC and in 2023 by Montero et al: https://www.sciencedirect.com/science/article/pii/S2405844023028207.
I’ve had a look at 2 studies about low dose NAC, and whilst they’re pretty certain that it is pro- as well as anti-inflammatory, in summary I don’t think it’s something to especially worry about. At most something to watch out for, which we do when we’re trialling anyway.
Low dose NAC was studied in 2014 by Ohnishi et al: Long-Time Treatment by Low-Dose N-Acetyl-L-Cysteine Enhances Proinflammatory Cytokine Expressions in LPS-Stimulated Macrophages - PMC and in 2023 by Montero et al: https://www.sciencedirect.com/science/article/pii/S2405844023028207. The gist of the first is “NAC administration has not only immune-suppressive but also immuno-stimulatory effects. This idea is supported by our in vitro study that low-dose NAC treatment enhanced proinflammatory cytokines in activated macrophages.” (Ohnishi) The gist of the second “these results suggest and support the idea that chronic administration of low NAC doses is a good strategy to maintain the redox state and thus prevent possible exacerbations, while in patients with an already established airway obstruction, an acute treatment with high doses would be beneficial for COPD patients.”
Quality of life: 90%
Lessons in self-care: Screen curfew OK, but bed too late.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
aa) Lucky for the guineas that I keep finding fresh grass despite it being December.
ab) A third blossom today, this time not a bud, a real blossom!: a blood-red cranesbill (geranium, actually scarlet, not blood coloured at all). The last was end of September.
Can’t say the rose campion blossom is making it, and whether the yellow rose bud will is hard to say, it’s still hesitating whether to unfold or not.
Last year’s first spring blossoms were mid-January a grape hyacinth / muscari in a flowerbed and the cornel cherry, then in February the snowdrops. This year may be very different, a much wetter and warmer winter so far, one frost period, now >10°C.
ca) Not easy getting Harley to eat in the morning, despite all time weight low (so yesterday didn’t work), but I got ever hungry Stuey out too, so then both out playing and eating on my floor.
cb) They love the fresh grass I keep finding for them every day.
cc) Sweet how the guineas often eat directly next to me, as they are now very sensitive I/we have to be very quiet and careful.
cd) Red paprika is what he loves most at the moment, that’s how I could get him to eat more again.
ce) Slightly worrying, but also exciting to find out that the bank vole has now moved into the cellar, after a stint in the shed. Not sure what to do yet except be more careful cos of germs and clean up all his droppings - he seems to be behaving well.
cf) Guineas playing hide and seek under their cardboard box, by lifting up and letting it fall down again.
cg) Harley’s new game is looking into the hole in the cardboard box, instead of out of it. Especially cute when Stuey then looks out and he looks in, so they’re “kissing” without having to resort to dominating or defensive behaviour.
ch) Harley often prefers to eat from whole pieces of veggie rather than the bits I prepare, altho it’s difficult, so I develop various compromises, offer the whole pieces in a box and see how far he can manage alone, or as he’s often smelling around all the little plastic bags with nuts and fruits, so I gave him the paper bag with oat flakes and that was also more attractive than when I offer him single oat flakes.
ci) Stuey is finding interesting stuff to eat in their rubbish bin tetrapak, which they’d thrown over, like yellowed grass I didn’t think they’d want. Then Harley similiar.
cj) Harley is now getting one of his own tea bags (for his mush) out of the rubbish bin, I think it was stinging nettle which he seemed to hate, well now it’s probably more the bag that he likes, like newspapers and stuff, but no matter, on his road we’re allowing him most of the few things he will eat anyway, except plastic bags (which both love ).
ck) I think the fun thing for them about eating out of the biowaste is cos it isn’t “allowed”…
cl) Finding further “traces” of the bank vole in another cellar room and have a suspicion where his nest might be - in some car wheels. My wife isn’t urging me to catch him, just not to let on to our neighbours, so they don’t overdo it. But we’ve agreed I disinfect everything regularly, with mask and disposable gloves.
e) Human life: ea) Laughing that mate hadn’t realized he has to be away today cos he never listens, as he confessed. eb) Lovely prezzies from my wife today (cos away yesterday): the new Asterix (childhood memories I feel like now), a dark green hoodie I’d chosen myself a week or two ago, but forgotten, a bird “candle”, bird calendar. ec) My wife likes all the books I have for her too.
f) Environment: Good to be outside again (could have been more and missed TT), but also to open the window with heating off for long periods.
g) Body: Comfortable.
Simplified: When shuffling cards for skip-bo in between playing I’ve found a way to put the cards down that show how much I’ve shuffled them (cos I often forget.
Foggies: “Body fog” (shaky) in the morning, or was that yesterday. No longer brain fog (woozy) tho.
Click for development/summaries and see profile...
More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023