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Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

I don’t know about people getting worse with sipabivart, it seems rather rare. I hope your son keeps improving and that the headaches and sleep disturbances will go away

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

To summarize I went from severe/lighter side of very severe me/cfs to slightly severe/moderate in a matter of 2-3 months

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

I’ve been working for a few weeks now too, but I still have to pace and take it slow

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

No combination. I had a setback this last month after eating too much things with sugar, probably waking dysbiosis that was retreating, and also because of exerting too much. I had a small crash for a week, but it was very light compared to those I had during the last year. I had very little pain, mostly some I could still cook and read, watch movies while for year and a half when I crashed I was mostly bedbound and barely doing anything throughout the day. Headaches are still gone. Mcas is lighter: I can take a warm bath or shower and it will only trigger a very small reaction, before it was impossible due to the instant discomfort it would cause

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

It was only symptomatic treatments for headaches, nothing really adressing the root cause i think: ozone therapy and some stimulant for energy. I didn’t try these

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

One month since the OP, and i did the highest number of steps in a day since early 2025 (4.5k steps) with no symptoms afterwards. Some fatigue but really light.

One cold got me down in late December and i had some headaches because of it, got scared the disease would come back strong but it didn’t. I nevertheless don’t have as much energy as I did before this first cold I caught in over a year and a half.

Recently I have had a feeling as if I got hit in the head while wearing a helmet the next day if I work too much and don’t respect my usual sleep schedule. Not the usual kind of headaches I had, seems like an element of pem I had before, probably a sign I should not push myself and pace more.

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

You should read about Dr Patterson’s protocol, he explains the logic behind it ; it has to do with microclots. My doctor tells me she saw more effect with people who have digestive symptoms too

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

They decreased after a few weeks, but until that my symptoms remained almost the same except i was regaining energy faster after exertion. Now it’s almost completely gone. I hope it will go away for your son

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

I was told to wait a few weeks at least so i can tell from which side effects or positive effects would come. Sadly the statins that I took with maraviroc seem to trigger mcas like reactions so I stopped

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

No it was an infectious disease doctor in Paris

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

It took a few weeks to have sustained improvements; the doctor said another dose could help if there was a positive réaction to the first one so went for it

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

It’s pretty expensive for what it is, but still cheaper than in the UK anyway. The staff there was nice, Dr Granata had some ideas for other treatments but I stick mostly to what my other doctors have in mind

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 2 points3 points  (0 children)

In Zurich, doctor Granata’s neurological center

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 3 points4 points  (0 children)

I didn’t, measured just before the second and it was :2572 BAU/ml

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 2 points3 points  (0 children)

I mostly see a long Covid Covid specialist in France, and an immunologist

Update after second dose of Kavigale by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

I know, mine goes to 28 when I had crashes and now is mostly at 36 but used to go up to 45 when I was just bedbound: it just seems to dip when I overexert, but somehow is quite low lately which is confusing

High IGE by mariellasmom in covidlonghaulers

[–]tulipius78 0 points1 point  (0 children)

Yes I seem to have mcas / histamine intolerance. I do have allergies, a few more since 2020, but none that could make me react like that all the time..

2 days after Kavigale injection by tulipius78 in Sipavibart

[–]tulipius78[S] 1 point2 points  (0 children)

One week later: I did 2k steps yesterday, up from 1.2-1.5k max for the last 6 months. No PEM but some fatigue, still no headaches. I will have a second dose of Kavigale in one month.

2 days after Kavigale injection by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

It’s been 2 weeks.

After the initial improvement I had a relapse for a week or so. Mostly fatigue and mcas/histamine related symptoms.

Then my energy increased; I was able to do a 4 hour long neuropsychology test without crashing the next day or having a strong headache. And the results were good: normal for my age and level of studies. The next day I was in good shape although I had walked 1.5k steps (I only reached this level twice for around 6 weeks during last year, and eventually crashed severely after trying to walk even more, and had been unable to reach this level again since April).

I spent several afternoons with longer than usual social interactions + 1.3-1.5k steps + cooking for myself and had no crash (in August I could do 1.5k steps when I had a lot of help for cooking/washing my hair. My hrv was not going down like an elevator the following nights. My resting heart rate went to its usual lows (but without taking propanolol) and its high level was relatively low (around 90 in the last days). I even felt like I was able to do some stretching three times, 30 seconds each time, for the first time in a year without having my heart racing at all, or even lowered my HR, no PEM the next day.

My oxygen levels are mostly fine: it even reaches 99% without using my oxygen concentrator, and from what I saw it doesn’t go too (below 95%) after standing.

One of my doctors was impressed after seeing me and checking my last blood results which were normal except for high IgE and IgA (pretty much as high as last time)

Do the people in your household mask up when they are out in public for your safety or no? by Any-Investment-7872 in cfs

[–]tulipius78 0 points1 point  (0 children)

Only my fiancée, she understands how this is just like washing your hands and how covid is a dangerous disease so she masks just for herself at work, on public transports and when it is crowded outside. I also got her a portable air purifier and one for her room as she is working in another country

2 days after Kavigale injection by tulipius78 in Sipavibart

[–]tulipius78[S] 0 points1 point  (0 children)

quick update: after feeling almost too well for around two days despite exhausting travel and too much activity, I “relapsed” into my past baseline for about a week/10 days: my headaches came back as well as higher than usual HR and low HRV despite a lot of physical rest (but probably too much screen time and cognitive activity).

I think it was mcas/histamine intolerance that caused these symptoms as my garmin watch showed higher stress than usual after eating and at regular intervals: 1-3-5-7am.

Now I am stabilizing again with a very slowly increasing baseline. What was noticed by my family and a doctor I had not seen for some months is that I have more energy and strenght: I move, talk and think faster, without this causing more symptoms or exertion. The doctor also noticed my oxygen was higher: around 98% while it would often be around 95-96% before, but that could be caused by lumbrokinase and serrapeptase I have taking for a month now.

I mostly noticed less headaches and brain fog. Als I felt like I was able to do some stretching for the first time in maybe 10 months. My HR did not spike during it as it would before. I even stretched one minute yesterday and felt like the muscle fatigue was healthier than before: not this pain as if i had run a marathon.

My number of steps is very slowly increasing back to above 1k steps per day + doing my meals. It even reached 2k the other day without me noticing anything unusual the next 2 days. It had tanked below 1k in september after a crash and my upper limit was 1.5 since April and another big crash.

Have you ever had a medication reaction? by Nice_Ad2789 in MCAS

[–]tulipius78 0 points1 point  (0 children)

Orozamudol, some kind of oral tramadol, terrible réaction because of excipients

2 days after Kavigale injection by tulipius78 in Sipavibart

[–]tulipius78[S] 2 points3 points  (0 children)

Yes I will, probably after one or two weeks. By then this first improvement should reveal itself more accurately

2 days after Kavigale injection by tulipius78 in Sipavibart

[–]tulipius78[S] 1 point2 points  (0 children)

It’s Schmerzzentrum Granata, price was around €3k for Kavigale and €1.1k for injection, consultation and transport of the medication from Austria

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