Sebastiaan Deetman

@lymecfs

Down with chronic Lyme disease, Long Covid, ME/CFS and POTS. Researcher in Environmental Sciences, Industrial Ecologist, Born at 348 ppm. patientledhypothesis.github.io

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Sebastiaan Deetman@lymecfs· Jul 10

Frustrated with trial-and-error approaches to treating #MECFS #LongCovid #Lyme & other #PAIS illnesses, I made a visual hypothesis of likely mechanisms of dysregulation. To discuss with my physician, but I thought I'd share it here too. Here's a clickable 🖱️ version: patientledhypothesis.github.io

Visual hypothesis of dysregulated metabolic feedbacks in ME/CFS. Compiled by Sebastiaan Deetman, the figure provides a schematic overview of mechanisms that are likely involved in causing the shared symptoms of ME and other post-acute infection syndromes (PAIS), regardless of the original trigger. Hyperlinks reference both scientific literature and existing patient-led hypotheses by Tamara Carnac, Patricia Donnellan and Jeff Wood. A maze of boxes and arrows link genetic sensitivities, key causative mechanisms such as cortisol dysregulation and mitochondrial issues referred to as 'the itaconate shunt' to downstream metabolic pathways such as the adrenaline synthesis pathway, dysregulated nitric oxide synthesis as well as the kynurenine pathway. At the center of the figure the arrows combine to show how many of these identified mechanisms cause issues with the constriction and dilation of blood vessels, leading to issues with blood flow and oxygenation, which, in turn amplify the inflammatory response, highlighted in red. These central issues are connected to smaller boxes describing secondary mechanisms such as blood clots, anaerobic respiration, ion imbalances, auto-antibodies, endothelial dysfunction, reduced antiviral activity, nerve-damage and issues with myelin repair, high estrogen levels and collagen degradation to show how these can amplify feedbacks and lead to a continued symptoms such as fatigue, PEM, sleeplessness, POTS, dysautonomia, histamine issues, brainfog, pain, muscle twitches, air-hunger, anxiety and depression. While not the main focus of the figure, it shows some available off-label medications (such as LDN, Mestinon and SSRIs) next to the relevant mechanisms that they likely address. Similarly some supplements and lifestyle-related suggestions are made where relevant, such as pacing, compression garments, meditation, GABA, glutathione, zinc, HBOT, Choline & Folate rich foods. With the warning that this is a hypothesis, not medical advice.

Sebastiaan Deetman@lymecfs· Mar 15

Today, on #LongCovidAwarenessDay I spotted this pamphlet on a real life bulletin board, how retro! It say "Lockdown over? Not for me." as it highlights the continuing struggle of people with #LongCovid - like myself. Link is to a fundraiser for more medical research by www.stichtinglongcovid.nl

Picture of a bulletin board with a pamphlet that says "Lockdown over? Not for me.". A campaign poster by the Dutch Long Covid Foundation (stichtinglongcovid.nl) to raise awareness for Long Covid and to raise funds for medical research.

Sebastiaan Deetman@lymecfs· Jan 30

Ontzettend bedankt voor je heldere en krachtige betoog in het #LongCovid & #PAIS debat gisteren 🙏 Mijn stem heb je alvast binnen.

Sebastiaan Deetman@lymecfs· Nov 7

Exactly! Which makes the real climate shift way scarier. Like shown by the data from svs.gsfc.nasa.gov/5452/

Sebastiaan Deetman@lymecfs· Jun 4

So, yeah... Being chronically ill isn't great, but it sure is expensive! After 10+ years of #Lyme and #MEcfs with years of #LongCovid on top, I realised I'm easily down (€) 200k in lost income and 50k in extra expenses. Could have bought a house, instead I buy supplements.

Display of many jars and bottles containing health supplements.

Sebastiaan Deetman@lymecfs· Mar 8

Sorry to hear, I have no experience with Mestinon, but seems to make sense as Acetylcholine may trigger almost anything, incl. (nor)adrenalin release. I personally need to ramp up/down medications 3x slower than suggested by doctors. It's hard figuring these things out yourself. Big hug & big howl.