Chris Werge

youtu.be/MxSkGx643go Sulodexide: Hope for Long Covid.

@SpeakOutNow16 @Naomi_D_Harvey Sulodexide (Branded on the box as Vessel 250 ULS)

@chriswerge @Naomi_D_Harvey Thanks for sharing this Chris and for staying on this app with some hopeful information .oddly this app is not letting me see them this thread. I don’t remember which medication you’re mentioning.!!

I am. It's been the most helpful out of all meds I've tried for Long Covid. Been out it a total of 12 months now and have been able to manage a 5day work week again. Still have pain and aches around the body but the best I've felt in 4 years.

Another powerful, heartbreaking piece on the destruction of lives caused by complex chronic disorders. 400 million people suffering. $1 trillion in financial cost. Long COVID has brought renewed attention to the human suffering caused by multisystem diseases that have devastated patients for decades. We now move beyond proving the problem to focus on the solution. Cancer research shows the world what becomes possible when science responds with urgency. Systems now exist that address the specific needs of cancer as a whole, individual cancers and then patients within each type of cancer: cancer genome sequencing, sophisticated imaging, massive, well-constructed longitudinal datasets, collaboration across best-in-class science, and investment at both philanthropic and societal scale. That has led to effective targeted treatments that extend and save lives. CODA brings the same level of urgency, a full scientific model and systems-based thinking to complex chronic illness. For while we learn from other diseases. Complex disorders require their own disease research model. Multisystem disease requires multisystem research. That means integrating and investing in best-in-class science, clinical data, AI technology, deep phenotyping, sophisticated testing and translational focus into a coordinated model designed around the complexity of these patients and the biology driving their illness. Follow @CODA_research. blog.brittanijamesmd.com/p/long-covid-c…

Headache in Long COVID is not one problem. Three patients. Three different mechanisms. Three different treatments. The one that helps one person does nothing for the other two.

After my worsening from immunoadsorption I tested positive for HHV6 reactivation. Highly suspect it drove the worsening.

🔬Study shows SARS-CoV-2 causes direct damage to heart cell mitochondria - even months after recovery - helping potentially explain Long COVID heart symptoms like chest pain, palpitations & fatigue. Let’s break it down 🧵

Herpes reactivation is a critically important issue that many clinicians still ignore. I hope HHV-7 will be one of the next viruses seriously investigated. When HHV-7 antibodies were found in my daughter’s CFS workup, my colleagues dismissed them as an “innocent” finding and said they could not possibly explain her 50 to 100 daily focal seizures. After I started valacyclovir, the seizures “magically” stopped.

Is it more socially acceptable to say you have a post-viral health condition than to say you have Long Covid?

From an autopsy-based case–control study, "COVID-19–positive cases demonstrated significantly increased reactive gliosis and microglial activation in the olfactory bulb, along with a higher frequency of mild perivascular lymphocytic infiltration in the frontal cortex.. Systemic pathological findings in COVID-19–positive cases were consistent with severe multisystem disease. [In conclusion,] COVID-19 is associated with region-specific but non-uniform neuropathological alterations dominated by reactive and vascular changes rather than encephalitic processes." People change after contracting COVID. 'Histopathological changes in the olfactory pathway in COVID-19: An autopsy-based case–control study' link.springer.com/article/10.100…

@anna_reise87030 @Sam_B_79 @Naomi_D_Harvey I noticed the difference from month 7 & 8

@chriswerge @Sam_B_79 @Naomi_D_Harvey How much time did it take to see results?

To those asking about Sulodexide and its dosages. I’ll refer to this as the Laubscher Protocol after Jaco, who I’m seeing for Long Covid treatment. 1 capsule morning and 1 evening. Evening tablet with a 1/4 disprin (75mg aspirin) By far the most helpful treatment I have done.

@Gmwetz @Illusionist999 A lot of meds do this unfortunately. Triple therapy also made things worse before they got better. Has LDN been helpful long term?

@chriswerge @Illusionist999 So hard to keep going with new medications if they make feel you worse. Same for me with LDN. Two weeks in at 0,25mg and feel horrible

@Illusionist999 Try hang in there for 8months. I hope you will get to see improvements. I don’t know if it’s a condition we’ll ever be truly free from but Sulo is worth the try.

@chriswerge Oh ok! Tried again last week and felt Long Covid symptoms/disautonomia flare right away.

One thing that isn’t spoken about enough is how chronic illness changes the way you communicate. A lot of chronically ill people learn to: - Minimize symptoms - Avoid complaining - Rehearse explanations - Downplay pain - Act more functional than they are Because being visibly unwell too often changes how people treat you.

Can’t believe I’m only coming across this paper now after today’s symposium. For 6 years I’ve been saying my long COVID is SARS-CoV-2 persisting in my nasopharynx and upper airway since day one of my infection. Persistent inflammation. Chronic mucus. Immune activation that never switched off. Something that simply never cleared. Nobody wanted to hear it. So many eye rolls and blank stares. Dismissed on the regular. Well here we are now. These pictures don’t lie. This Cell Host & Microbe paper using [18F]F-AraG PET imaging found elevated immune activation specifically in the olfactory and nasopharyngeal region in long COVID patients. Exactly. Where. I. Have. Been. Pointing. This is what serious long COVID researchers and patients have been saying for years: SARS-CoV-2 persists in mucosal tissues (the gut + nasopharynx especially) and that persistence is what is driving our illness. This paper fits that framework precisely. For the folks like me with chronic mucus issues, smell changes, neurocognitive symptoms, GI issues, and that feeling something “never cleared,” this is finally research that says: “I hear you” & “I see you.” So again as I’ve said before and I’ll say it again - mark my words - : viral persistence in the upper airway/nasopharynx = long COVID. 🔗 science.org/doi/10.1126/sc…

@Sam_B_79 @Naomi_D_Harvey #longcovid

It assists with reducing inflammation, breaking down existing micro clots, as well as preventing new clots from forming. Hope this is helpful to those seeking something to try. @Sam_B_79

@adic_9 I’ve struggle with histamine and mast cells but hard to know to what extent. Is there a test for MCAS levels?

@chriswerge to anyone reading this with MCAS, it is a MASSIVE MCAS trigger

@Illusionist999 Symptoms do get worse initially yes and first couple of months are painful as clots breakdown.

@chriswerge Do you remember if it gave you side effects or like symptoms flare at first?

@adic_9 Just oral.

@chriswerge Also all the clinical evidence is for IM, not just oral. Are you doing IM?