Long Covid Microblog

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

16.11.2024

Fifth day. Sadly the patch loosened during the night. Yerstday I started feeling dizzy after applying the new patch (still 3.5) but it got better, but still no symptom improvement. Today is exciting, gonna up the dose to 3/4 of a 7mg patch.. We'll see how bad the reaction is.

15.11.2024

Fourth day on 3.5 mg nicotine / 24h. No improvment yet. Night was definetly better. I feel 3.5 can be quite much. I'm pretty confident it makes my symptoms worse. But I keep at it. However I don't yet feel comfortable upgrading to 7mg

But another thing: I decided to not touch my phone until after lunch, which is a blessing. I should do this more often - The mindless consumption of media, not reading any article until it's end, listening to music all the time just to not hear silence, the mindless video binging - It's maybe a form of coping. But today I realised that this calmness is much better for me (one has to say that I did a walk in the forrest with my friend and only worked for 1 hour, so the load wasn't that hight) but still - Without the constant stimmulation I feel much more calm.

I want more of this. I'll have to plan for phone-free days! The sad thing is: I was at this point a few times in my life already and I never made this mindset last. I always come back to consuming mindlessly again - But hey, it's nice atleast that I can recognize these patterns in the first place to act on them, even if I can't protect myself constantly!

But yeah... I wann do phone free days more often. I'll put my phone away from my bed again this night. And sunday I'll do a complete phone free day to get more creative stuff done (working on yt video and a track in ableton right now).

Also uninstalling instagram already feels good again - man, we are just not made for this constant bombardement of information.

today is friday.

14.11.2024

Third day on 3.5 mg nicotine / 24h. No improvment yet. Night was very bad with super vivid dreams and sweating, have a bit of a cold at the moment (also before nicotine). Fell more brainfoggy and energyless from the nicotine but I see it as a good signal. Tommorow gonna do 7mg

12.11.2024

Starting Nicotine Patches today! (Because of this)

08.11.2024

Doing LDN 2mg at bedtime again and it works. Together with no histamine, magnesium glyc, I sleep wayyyy better! Currently got the flu, noticing way haeavier brainfog. Although nights are better, not all symptoms are gone.

Nicotine patches just arrived here yesterday. When I have recorved from the flu, I'll try them. Also I feel like my diet is really powerful, as the flu did not hit me nearly as bad as my friend with whom I live.

Also I am very satisfied with the balance between living and caring for the illness:

• Stick to the new diet (much fibre, less sugar, no histamine, avoid processed foods)
• I don't google at all, which helps with stress

25.10.2024

Stopping AIP. See my post on my main blog why. (of course gonna continue to eat well :D)

23.10.2024

Night was worse than yesterday's. I suspect pacing. To be honest, I didn't really pace well yesterday. Also less energy and more brainfog.

I have to start taking pacing much more seriously (but it's so damn hard). Anyway. Today is strict AIP day 3.

22.10.2024

Slept through atleast until 6am. Currently doing 2mg LDN every other day. Feeling great today. Symptoms not vanished but way better than with bad sleep. Polyp is also a bit smaller / nose is not 100 % stuffed.

• Doing strict AIP diet since yesterday
• Started taking magnesium glycinate two days prior, might help sleep

12.10.2024

• green tea yesterday at 7 pm. Wouldn't let me sleep until 12:30 am. Given my extremly sensitive reaction to coffee, this isn't a suprise, but did not expect it.

• today same experiment without any caffinated drink

• still having super vivid dreams

11.10.2024

Antibiotics are working. Woke up at 5:50 AM, which definitely felt like an adrenaline/histamine rush - might make sense since I did not eat histamine free the yerstday at all. Will do magnesium + no histamine today

10.10.2024

• currently suffering from a skind infection - bit the bullet and started taking antibiotics.

• this week has been super exhausting - physically and mentally. I started a new job and visting courses at university again. Mood was exceptionally low this week

• But slept suprisingly well this night. Diet two days prior was about 75% histamine free. But I suspect the high dose magnesium I took yesterday might be to blame for the good sleep (not waking up). I'll take the same supplement today again.

During all those months, a recurring theme was sleep. I notice that sleep is at the basis of wellbeing. If I could only pick 3 areas to focus on during long covid (or chronic illness in general) it would be:

• sleep
• avoiding stress
• diet

If was allowed to pick more I would also directly include:

• social interactions
• movement
• nature contact

We'll see how this magnesium experiment goes. If it does fail, I'll consider stronger sleep meds like benzos...

Without good sleep, I can't recover.

03.10.2024

• left nostrill 100% free. I mean it. Really stress tested it. It's as clear as it can be. How is this even possible? It's as if the polyp completely vanished in 3 days. At first I felt a pain while inhaling as if i had a wound there... But now any sensation of blockage or wound is gone

• can't really link it to any specific event, but happened after hiking in albania for a week (I did not care about eating habits there at all) and taking 2mg LDN in the noon after not taking it for the whole trip.

03.10.2024

• left nostrill 100% free. I mean it. Really stress tested it. It's as clear as it can be. How is this even possible? It's as if the polyp completely vanished in 3 days. At first I felt a pain while inhaling as if i had a wound there... But now any sensation of blockage or wound is gone

• can't really link it to any specific event, but happened after hiking in albania for a week (I did not care about eating habits there at all) and taking 2mg LDN in the noon after not taking it for the whole trip.

21.09.2024

Slept better today, without LDN. I had the feeling that 2mg may be too much for the night. Currently don't have the funds to order more LDN but will do in the future. Will then try 1.5mg. I'll try it without LDN (but with ketoferin) this night again.

20.09.2024

Another day, another adrenaline rush at night. Third night in a row. It drags on you. But I carry on. Sometimes I think about sleep aids like benzos etc but I am still far away from trying those.

19.09.2024

• Woke up at 6am (well, atleast not 4pm 🙃) with both sides of my nose sooo stuffed. Decided maybe it's dust mites this time around (just a contributing factor)

• Took Bilastin anti-histamine and brainfog got better. Might also be placebo and or due to passing time - although I still find it unusual how mild the brainfog is for that time of day (12am)

• Generally, might be last weekend still hitting (it's thursday oof)

=> Gonna watch the dustmiles and bilastin stuff.

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

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.

---

Edit evening: wow what a fantastic day! I have to remember this one. I would pay so much to feel like this every single day - I'll get there. Symptoms not fully away, but man this feels good.

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 😵)

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.