Long Covid Microblog

Here I document my journey dealing with Long Covid. I know I'll make it some day.

17.09.2024

• Went raving 3 days ago. Really heavy crash yesterday and today.
• It's already a bit better but symptoms still going strong.
• Also sleep is impacted again, with waking up at night besides not eating anything with hihg histamine. I tihnk it might just be the physical stress I put my body through
• I'm much better at dealing with the symptoms now, which I'm proud of. Nontheless, yersterday was pretty hard.

12.09.2024

Something very strange happened this night: I had very vivid dreams again. I woke up quite often and overall my sleep was unrefreshing - in contrast to yesterday, where I felt sooo good. Here are some facts:

• ate almost exclusivley AIP diet (yesterday). So only vegtables like sweet potato, zuchini, salad, etc. (I had eggs and coffe)
• had 20mg L-Glutamin (from fermentation process) around 4 pm.
• no ketoferin before sleep (ran out, got new supply today)
• Left nostrill again stuffed when I wake up, was pretty clear when I was going to sleep
• EUNOVA® VivaChrono before bed (b1,b2,b5,b7,b9, magnesium, selenium and zinc) (5mg zinc)
• seperate vitamin c plus zinc tablet (300mg c / 10mg zinc) before bed
• 2mg LDN before bed
• 3x nattokinase (2000FU per tablet)
• experienced more bloating after waking up today
• had small chicken snack (only seasoned with salt) right before sleep

Now why were my two nights (yerstday and the day before) so different?? Here are my (partly wild and uninformed) theories:

1. Pacing: Due to the coffee and the overall good-feel I did not really do pacing. This might have stressed my body again, leading to the unrefreshing sleep and surge in symptoms

2. Too much supplementation: Technically, I consumed too much zinc. Maybe this threw stuff out of balance?

3. No ketoferrin: If I really have MCAS, my base histamin level might be high. The missing ketoferin might have allowed the histamin level to rise quite drastically (natural histmain spike in the early morning hours).

4. Coffe + L-Glutamin + MCAS + no ketoferin: (related to theroy number 3): Coffee is often not well tollerated in people with MCAS, and additionally it might be a bit moldy, which is also a driver for histamine. I must also say, that since COVID, I am very sensitive to coffee. I drank only half a cup of black coffee and my heart was racing, I got a bit of stomach ache (~10mg Ritalin like feeling). I drank the coffee on an empty stomach around 09:30 am. Also I had L-Glutamin made from fermentation (a possible histamin trigger??)

5. Too much LDN: This is weird given I've slept well with 2mg before. But since LDN plays on endorphin system... Maybe LDNs effect varries from day to day, depending on my bodily state? (So maybe it is more suspectible to subtle changes in the body chemistry?)

6. The bloating - wakefullness correlation: I listened to a podcast a while back where a woman describes having almost exactly the same symptoms as me: bloating, the "lava" like rushes going through your body. Being wide awake at night. She resolved it with eliminating archea from her microbiome (she suspected covid threw her microbiome out of balance) [ps: you should read the book "10% human"]. So I also experienced more bloating this morning - maybe this is the correlation? Maybe the bacteria overgrown again because I ate sooo much fiber? Maybe they produce some chemicals that contribute to histmaine or activate another mechanisim that keeps me awake??

Now, what do we do? An experiment! Today I will do everything like yerstday: coffe, l-glutamine, the vitmaines, the ldn, the diet. Except I will change one variable today: Take ketoferin before bed again.

See you tommorow! (btw brainfog is so high currently 😵)

12.09.2024

Slept through. Was it the ketoferin or placebo? I don't know. Fact is: I have 100 ketoferin capsules now. Show work for at least 50 days. No coffee today. Hopefully nights like this will get normal now.

Also for the past 5 days, I've managed to take a cold shower every morning. This feels amazing. However I've not been doing a lot of meditation lately.

Also in the last 2 weeks I attended bi-weekly taekwondo training. I don't take part the whole time and do a lot of small pauses (pacing) but it helps me a lot (especially mentally) to have more routine again.

11.09.2024

• Slept through again!

• Yesterday no histamine

• Feeling really good this morning. Less brain fog and more energery overall.

• Did a cold shower and having a coffee in my favourite cafee to celebrate

• I suspect no histamine + LDN at night + Ketoferin might be responsible.

• Left nostrill still stuffed. Night was really cold

07.09.2024

• was high yesterday evening. The hunger kicked in bad and I ended up eating 3 slices of pizza, lots of nachos and some cupcakes at a party. I felt really bad. This is a worst case scenario. I eat so much stuff which will trigger histamine, is bad for my microbiome and slows down my digestions. I was angry at myself. I knew today is an important day - a daytime rave.

• Before bed I took my normal doses of 1x ketoferin, 1x 2mg LDN. On top of that I took 1x Doxylamine, 1x ginger extract, 1x artishoke exctract, one multivitamin tablet (described later) and some magnesium. heated up two cherry stone cushions and placed them on my belly. I searched my stash for another h2 blocker, since both doxy and keto are h1 blockers. But I did not find my allegra...

• the mutlivitmain (EUNOVA® VivaChrono) tablet contained: b1,b2,b5,b7,b9 and magnesium, selenium and zinc.

• And to my suprise.... It was a good night! I was awake in the early morning hours but went to bed fairly quickly again... I was in bed until 12pm, which is really long but I guess I needed that. Today the fatigue and brainfog are really not that strong, which makes me super happy ^^ I'm full of dopamine because I know the rave coming up will be good 😈

• Also I noticed that there were significantly less farts even after this horrifically bad meal of sugar and fat - this shows that pre and probiotica are working.

Now - what to take out of this? Maybe I should take even more anti histamines?? On the other side, doxylamin is mainly taken for its sedating effects... maybe this was the main driver? In the end, I think everything combined might have helped and mitigated the worst. Still, in the next days I'll experiment with complementing the ketoferin with another h1/h2 blocker (Because I suspect that there might be SO much histamine that a higher dosage would be needed) [well this might also apply to LDN: maybe I need to go higher... I am naturally a person who does not like to dose high]

Anyways... enough for the the documentation and pondering (remember sympathetic activity?). I'll go raving now :)

05.09.2024

• Slept through the night again! Did low histamine two days prior. Possible connection?

• Taking Ketoferin in the morning and before bed currently

• Still on 2mg LDN before bed

• Bloating has really decreased. Although I noticed that I have to keep at the high fiber diet + pre/probiotics to maintain this.

• Currently trying to meditate daily. It's nice because I can switch the methods up and I can do more than once a day if I feel like it.

• At this point, meditation has grown on me. I start to like it and look forward to doing it.

• Just informed my health insurance about the HBOT therapy. Hopefully they'll cover the costs!

• Currently thinking about MCAS + Mykotoxin exposure again a lot.. Is it real?? Should I try a binder? I did a research session with my gf and we came to the conclusion it isn't important... Still don't know fully.

• I noticed that it is better for me to embrace days where I have a big crash: Rather then forcing myself to work on my projects, I really take a break and do nothing. This results in me having more energy the next day. So pacing works, but it's still hard most of the time.

28.08.2024

Cold showers and breathing. Cold showers and breathing. Cold showers and breathing. Cold showers and breathing. Cold showers and breathing. Cold showers and breathing. Cold showers and breathing. Cold showers and breathing. Cold showers and breathing. Cold showers and breathing. Cold showers and breathing.

Also real crash today. Last two days were filled with stress and planning. It's actually nice to be noticing this today. Reassures me that I'm on the right path with my treatments.

27.08.2024

• Histamine experiment didn't go as planned. I think I slipped one or two times, was unable to scan. Overall did approax 90% histmain free but did wake up at night. But as always, there are so many factors to this.. This makes such experiments really difficult.
• Starting ketotifen, zink and vitmain c as a mast cell stabilizer today. We'll see how things go.
• first time taking ldn before bed. Slept ok.

Today I also visited the doctor who prescribed me Low Dose Naltrexone. We agreed that I continue the treatment and I further experiment with the dose. Maybe going down to 1.5mg will yield more benefits. But the most important thing he mentioned was: keep on doing non medicative anti stress interventions: parasympathetic activities. Social activities, movement, breathing exercises. This was good to hear as I tend to sometimes forget about it and slip into a downwards spiral of overthinking, hyperfixation, and bad sleep.

Oh and I wanna change my breathing excercises so that I breathe more into my belly instead of chest.

(But i think that there can also be upward spirals! 🚀)

update 22 pm: Best deciscion of the month: go to taekwondo training. I ended up not going for the longest period of my life because I always did too much and ended up crashing afterwards. But now I have a new mindest: Pacing. With it, i was able to enjoy training without risking a crash the next day. The movement, seeing fammiliar faces in the gym, talking... How did I not do this for so long?? Thats parasympathic. For so long I coulnd't do it, because my expectations were so high - but now I know the right way.

26.08.2024

• I currently suspect that I also have MCAS, which is fairly common
• Tommorow I want to convince my docotor to perscribe me Ketoferin, which is a mast cell stabilizert
• Did not manage to sleep through the last 3 nights..
• But noticed how important social interactions are, to allow yourself some time of not thinking about the future, which is parasympathic activity
• Right now dreaming soo much about the illness.
• Nose stuffed again...
• Today I'll start taking LDN at 10:30 pm, just to try out if it will improve my sleep. I did not sleep well form it when i started but maybe my body has adapted.

21.08.2024

Its 05:35 AM. After two very good days. It happened again. I am wide awake. Same happened tonight at 3 am. F* this.

But this time I have a suspicion. Due to unfortunate circumstances, I ate 200g of peanuts. I just realized later: They are very high in histamine... Oh yes... the beloved Histamine. Many LC patients have MCAS. I am aware of that for a few months now, yet I did eat the peanuts. Why? Because of 2 things: 1) I didn't remember they were high in the beginning and 2) In the end I didn't care. "Avoiding histamine isn't that hard", you might say. I agree - if it would be the only problematic food class. Diet on LC is one hell of a f*cking mess!! You have anti inflammatory diet (AIP), low fodmap, anti histamine, and low fat diet. I went through all of those and each possible combination. It's hard. And confusing. But with MCAS, a dysregulated nervous sytem and gut dysbiosis, you have no choice.

The many facets of LC are a real problem for me. I tend to hyperfocus on one thing and kind of forget about the other stuff. I don't wann be full time patient! I also don't do food tracking for that reason, but maybe I should.

Lastly, I wanna see this event on a positive note. Maybe this was a calling. For the next 5 days, I will go strictly no histamine while also keeping all other remedies. I'll write a second entry.

See you and don't give up xoxo

18.08.2024

• Did not wake up at 3-4 am!! This is big. I feel more refreshed. I don't know exactly why. Spent evening with gf and friends outside and later meditated. This is in contrast to my typical evenings of trying to program. Also don't recall having much difficulty drifting into sleep. Maybe my mind was just more at rest.

• started allicin yesterday to aid in fighting the dysbiosis. Together with a biofilm disruptor, this should work

• also my one sided nasal polyps are really small today. Airflow is noticeably better than worse days. It's crazy how fast nasal polyps can grow/shrink

=> This shows again the importance of sleep and mindset/mood before going to bed. I want to achieve this state more often. Maybe avoiding the computer in the evening and socializing more to "round off" the day is the way to go.

16.08.2024

Starting this blog today. I wanted a place where I can write down small updates about my health condition. This really helps with not getting lost in all the ups and downs and self reflection. This will be the only longer entry since I have to catch up with what has happened till now:

• wish I started microblogging earlier
• currently on: 2mg LDN, black seed oil, serapeptase, nattokinase, PHGG, parenterol forte, artichoke, ginger, 15% CBD oil
• very good night today. Took Doxylamine. Woke up at 4;00 pm as usual but not completely alert but sleepy, which is good.
• alternating hot/cold showers, meditation and wim hoff breathing help so much more than I thought
• currently saving money to be able to do HBOT
• working on my gut dysbiosis. Since eating more fibre and doing 16/8 fasting, heavy increase in bowl movements (good) and decrease in bloating ^^
• but night before this one did only sleep ~2 hours due to mental stress (mental throwback to earlier times resulting in anxiety)

08.07.2024

[retroactive entry]

Published fifth video blog: LDN started to work but got SIBO test back showing increased methan levels: yt link

25.06.2024

[retroactive entry]

Published fourth video blog when finally starting LDN, which turned out to be a total blessing and really elevated me to a new stage of well being yt link

02.06.2024

[retroactive entry]

Published third video blog, with more attention to the dysregulated nervous system (was an important step for me)

yt link

29.05.2024

[retroactive entry]

Published second video blog when noticing I am relaxed - a feeling which I long missed. yt link

23.05.2024

[retroactive entry]

Was at a very bad place, deceided to start with YouTube blogging: yt link. At this point I wasn't even sure that I had Long Covid.