Roki

[Roki @Ntrro1]

@DocZing Very interesting paper with potential therapeutic target. If MMP dysfunction is a major disease driver by causing excessive ECM degradation, could low dose aspirin and lactoferrin (besides doxycycline) help in #hEDS? They appear to inhibit MMP expression.

https://t.co/3BJGGlMvLv

[Roki @Ntrro1]

@grok @pathdoc3 Another one could be Lactoferrin:

"Dysregulation of immunothrombosis leads to pathological vascular obstructions in inflammatory diseases. Lf may be able to regulate immunothrombosis by suppressing overproduction of neutrophil extracellular traps."

https://t.co/rQ014Jh7GZ

[Roki @Ntrro1]

@pathdoc3 @grok How about coQ10?

CoQ10 / ubiquinol could be a key supplement for long Covid innate immune activation and NETosis, inflammation and "protective" thrombosis: the entrapment of spike in blood clots to prevent their systemic spread.

https://t.co/Wz03vcZz7O

[Roki @Ntrro1]

@JimHoff4295393 @resiapretorius @dbkell @DrGrahamLJ @j_b_kennedy @doctorasadkhan @Sunny_Rae1 @BinitaKane Ubiquinol (coQ10) has been one of my key supplement to reduce #LongCovid thromboinflammation.

1) Decreased IL-1β and TNFα mRNA, decreased production of IL-6 and IL-8, reduced TF expression and activity.

2) Reduction of ROS-induced NET formation.

https://t.co/ZB37bDEhnv

[Roki @Ntrro1]

@makemevisible24 Maybe similar to Clonazepam (another benzo)?

Other than having mast cell stabiliser properties, Clonazepam regulates oscillations of blood flow to heart and vital organs in dysautonomia. Also helps sympathetic surges.

https://t.co/su0b7CFJEt

[Roki @Ntrro1]

@HalfThePerson @Covid_institute 💯. I recently learned - 6 years after my severe Covid infection, which made my EDS and MCAS significantly worse - that I have severe complement deficiency (MBL). I think mast cells "replace" in my case the deficient part of my complement system.

[Roki @Ntrro1]

In case it helps anyone with #longCOVID and #EDS, #MCAS

I have Mannose-Binding Lectin deficiency: a primary immunodeficiency.

1) When Mannose-Binding Lectin is deficient, the initial immune response/innate defence fails so your mast cells are forced to take the fall.

[Roki @Ntrro1]

3) In the absence of efficient MBL/complement handling, mast cells may be over-recruited or chronically stimulated to "pick up the slack" - leading to excessive or inappropriate degranulation and mediator release.

[Roki @Ntrro1]

In case it helps anyone with #longCOVID and #EDS, #MCAS

I have Mannose-Binding Lectin deficiency: a primary immunodeficiency.

1) When Mannose-Binding Lectin is deficient, the initial immune response/innate defence fails so your mast cells are forced to take the fall.

[Roki @Ntrro1]

2) Mast cells often appear "misbehaving" but they serve as a backup or compensatory innate mechanism. They can directly recognize microbial patterns and orchestrate broader inflammation/recruitment.

[Roki @Ntrro1]

@doubletamponne @Soozinn @ScotCanadaLaura @BShapiroMD @awgaffney There is indeed a link between EDS and autism: I have diagnoses of both. Most psychologists (and pulmonary doctor Mr Gaffney) have not been trained on neurodiversity - they assume a physiological cause because they simply cannot distinguishing neurodivergence from mental health.

[Roki @Ntrro1]

@pausedME (2) SICI is reduced (meaning less inhibition is occurring), which indicates cortical hyperexcitability. Some of the meds you take treat exactly this: reduce the excitability of neurons. I take intermittent Clonazepam to get me out of/prevent worsening of dysautonomia.

[Roki @Ntrro1]

@pausedME Very interesting topic. This imbalance/decreased GABA neurotransmission is measurable: (1) neurologist can order transcranial magnetic stimulation (TMS) test. The test measures the inhibitory process in the brain's cortex.

[Roki @Ntrro1]

EDS may represent a subtype of autism: "The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders"

https://t.co/S3cSZ0YfNO

[Prof. dr. Vivienne Matthies-Boon @V_MatthiesBoon]

Very interesting paper on the cardiovascular manifestations of #MCAS/#MCAD

https://t.co/tRqG26eMu8

[Karen Lubell @karenlubell]

New EDS paper: "These findings challenge the traditional view of hEDS as solely a connective tissue disorder and support a revised paradigm that includes innate immune dysfunction." #eds #heds #ehlersdanlos https://t.co/nBpBYdzWwc

[Naomi Harvey “PhD Witch” #WearAMask @Naomi_D_Harvey]

On low intensity ultrasound for collagen regeneration. One testament from someone with EDS

[Wonder of Science @wonderofscience]

Microscope footage showing the degranulation of mast cells, immune cells that release histamines and other substances, sparking inflammation and allergic reactions.

📽: Timelapse Vision Inc/SPL

[Roki @Ntrro1]

@Kelsveil Interesting conclusions: "LC has been associated with substantial, persistent healthcare utilisation and cost over the last three years."

Lets hope things are looking up. LC has been clearly disabling to patients but it also very expensive for the NHS.

[Roki @Ntrro1]

@AlexSprackland @PaulRKeeble OCT is more commonly available and OCT angiography (OCT-A) is an extension of OCT that enables capillary-level resolution. Specialised eye hospitals have arrange this scan (eg Moorfields Eye Hospital or King's College in London).

[Roki @Ntrro1]

@AlexSprackland @PaulRKeeble Yes but they need to do the right test OCT-A (not OCT). I had OCT-A and it was all normal. Ophthalmic surgeon arranged mine, optician cannot do this test and even my surgeon asked for a second opinion to rule out relevant microvascular abnormalities.

[Roki @Ntrro1]

@miriamfrankmac I hope it helps. I also think our typical LC meds could contribute to mitochondrial disfunction.

Check out the list of common drugs causing mitochondrial toxicity: eg statins, aspirin, NSAID or beta blockers, certain antivirals... so many of have to use these meds!

[Roki @Ntrro1]

It would be helpful for studies to start making recommendations on treatment.

Interestingly, common meds we often use in #LongCovid can impair mitochondrial functions.

Some treatment options + list of drugs causing mitochondrial toxicity.

https://t.co/i4XP2jp72W

[Roki @Ntrro1]

@miriamfrankmac It take/took 10-Q Co-Enzyme Q10 100mg from TriOn Pharma Ltd and ACo Q10 100mg from Essential-Healthcare Ltd.

[Roki @Ntrro1]

@miriamfrankmac Yes, sadly for me only the prescription grade helped. Neurologist started me on 100mg OD and then 100mg DB after a few weeks and then 200mg DB over time as you get used to it. After x years I realised that many of my symptoms return if I stop CoQ10 so I remain on low dose 100mg.