Sebastiaan Deetman
lymecfs.bsky.social
Sebastiaan Deetman
@lymecfs.bsky.social
Down with chronic Lyme disease & ME/CFS, Researcher in Environmental Sciences, Industrial Ecologist, Born at 348 ppm.
Ba dum POTS!
November 11, 2025 at 6:28 PM
Yes almost immediate and short-term, lasting an hour or so. Indeed comparable to green tea, both a subtle boost & a calm. Probably by regulating cortisol & consequently adrenaline, but the details are beyond me. I used caps for a few months, but didn't notice any fundamental effect on symptoms.
November 8, 2025 at 6:49 PM
Ginseng was suggested in a treatment protocol by Manuel Ruiz-Pablos. Similar to coffee, I feel temporarily better on it, but I'm cautious. From what I remember it supposedly surpresses immune response, so one may have to take it with anti-virals. Here's a link: pmc.ncbi.nlm.nih.gov/articles/PMC...
Hypocortisolemic ASIA: a vaccine- and chronic infection-induced syndrome behind the origin of long COVID and myalgic encephalomyelitis
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), long COVID (LC) and post-COVID-19 vaccine syndrome show similarities in their pathophysiology and clinical manifestations. These disorders are related to viral or adjuvant persistence, ...
pmc.ncbi.nlm.nih.gov
November 8, 2025 at 2:32 PM
Very sorry to hear, it's raw. This recent publication may not be directly practically useful, but I definitely found it relatable. It's both scientifically reflective and deeply personal, so I hope you find it helpful 🍀: link.springer.com/article/10.1...
Experiences and challenges of staying employed with chronic fatigue syndrome - Discover Public Health
Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating condition that affects individuals’ ability to engage in sustained employment. In India, limited research has e...
link.springer.com
November 8, 2025 at 2:10 PM
Exactly! Which makes the real climate shift way scarier. Like shown by the data from svs.gsfc.nasa.gov/5452/
November 7, 2025 at 8:38 AM
Thank you 🙏 This spoke to me as an ME patient, as an environmental researcher and as a Buddhist. This is the practice, indeed.
October 30, 2025 at 9:09 PM
Thanks so much for sharing this! I hadn't connected the dots yet, but been in "impending doom" mode for 10+ years; it sucks! No clue it was an MCAS thing, but it makes sense. Antihistamines hit me hard though, like total body shutdown, but even that makes sense after sounding the alarm for years. 💙
July 31, 2025 at 8:40 AM
That's a long & relatable list. Sorry to hear. I've felt notable benefits from: Selenium, Glutathione, Molybdenum, B2. But I would recommend a DNA test & download the raw data to analyze it through geneticlifehacks.com Using genetics to find individual do's and don'ts saves 💰, time & frustration. 🍀
geneticligehacks.com
July 6, 2025 at 7:33 AM
Insightful resource! Good to keep in mind, that the peak of that curve is shifting in two ways: 1) towards higher temperatures (as shown), but also 2) the frequency of 'average days' goes down and is redistributed towards the more extreme ends 🥵 Video via svs.gsfc.nasa.gov/5452/
July 4, 2025 at 7:11 AM
I use Chronic Lyme, except when speaking to doctors, then any Post [...] acronyms seems to work better. And I use 'crash', but really it's probably mostly PEM.
June 28, 2025 at 12:32 PM
Very clear explanation of an important new study. It even references the partial, but likely, role of IMO sulfur emission regulations for ships in the scorching hot summer in the Northern Hemisphere in 2023. @leonsimons.bsky.social
June 5, 2025 at 10:39 AM
No, me neither, but just saw a great @putrinolab.bsky.social intro at the intl. #MEcfs conference '25 (today) mention this study pubmed.ncbi.nlm.nih.gov/38496502/ which suggest low cortisol is one of the few shared markers between sexes in LC. Still not sure about trying Vitex, hormones are complex!
Sex differences in symptomatology and immune profiles of Long COVID - PubMed
Strong sex differences in the frequencies and manifestations of Long COVID (LC) have been reported with females significantly more likely than males to present with LC after acute SARS-CoV-2 infection...
pubmed.ncbi.nlm.nih.gov
May 12, 2025 at 10:06 AM
Interesting, I didn't hear of Vitex agnus-castus before. It's supposed to boost estrogen, right? Which slows the breakdown of (nor)adrenaline & lowers subsequent hydrogen-peroxide release. Potentially saving Glutathione. Air hunger is such a mind-boggling symptom, but there may be something there...
May 11, 2025 at 5:21 PM
Thanks for sharing, Jaime. This is very relatable. Air-hunger is horrible (also had it at 11yrs & developed #MECFS much later). Never linked it to the air pressure yet! 🤯 What I did find is that boosting Glutathione through direct supplementation or molybdenum & sulforaphane gives some relief. 🍀
May 11, 2025 at 7:59 AM
Good to see more research on niacin! The only vitamin I know that scavenges Quinolinic acid, aka (the mighty) QUIN. Which is an NMDA antagonist/excitotoxin. Probably involved in many behavioral & psychological issues around PAIS. More research needed, but in the meantime I'll start with NA patches.
April 12, 2025 at 11:11 AM
Wow, I love how your work helps to provide such vivid images to things like neuroinflammation, which I'm actually experiencing at the moment. Imagination in UHD! Quite an upgrade from how I imagined being a red blood-cell delivering oxygen growing up in the 90s 👉 m.youtube.com/watch?v=i-2J...
Once Upon a Time... Life - The blood
YouTube video by Once Upon a Time... (Hello Maestro)
m.youtube.com
April 10, 2025 at 11:23 AM
Thanks! And sorry to hear about your issues too 🫶 It's encouraging to hear that you've found some things that helped though. Even small steps forward are so valuable. And yes, love the work of @remissionbiome I need to catch up on some videos. Take care, and hope the 👁 gets better!
April 5, 2025 at 3:28 PM
Yes, definitely; only one side though. And probably due to longer lingering #Lyme with a #LongCovid cherry on top 🍒. It's weird because it seems more a nerve thing than a lens issue. As if the signal is just not coming through. Have you tried Luteine/zeaxanthine? Heard it could help with eyes.
April 5, 2025 at 2:26 PM