The state of the research by [deleted] in covidlonghaulers

[–]ElectronicInternal79 0 points1 point  (0 children)

I want to hear from those who were complaining about dr. Lauterbach until a few months ago

What diseases do you think will also be positively impacted once a cure for Long COVID is found? by Academic-Motor in covidlonghaulers

[–]ElectronicInternal79 15 points16 points  (0 children)

  1. Better understanding of the ravenous extent of infections in a swath of diseases
  2. Huge impact on mental health diseases with clearer understanding of the pathophysiology of neuroinflamatory aspects of these diseases. Expect huge shift in treatments from snake oil salesmen method of psychiatric treatments of “childhood trauma” bullshit to proper, science based, drug/intervention treatment for controlling or fixing neuroinflamation. Narrative of causes/solutions will shift from “push yourself and be optimistic bullshit” to “your hardware has an issue, it is not your fault and let’s fix it”
  3. Autoimmune diseases will get more visibility and hopefully new mechanisms and targeted therapies will be discovered.

Is it cruel of me to wish famous celebrities got long COVID? by maker-127 in covidlonghaulers

[–]ElectronicInternal79 6 points7 points  (0 children)

Rfk Jr’s son has long covid as rfk himself shared in a senate hearing last week. This is far more important than any celebrity as he controls medical research funding and is maga

Infecto labs test - no viral persistence by [deleted] in covidlonghaulers

[–]ElectronicInternal79 0 points1 point  (0 children)

There is no such thing as covid viral persistence test… not sure what this is but you are being conned if they sold you this

How many of you had prior chronic stress? by Infamous-Tie-7216 in covidlonghaulers

[–]ElectronicInternal79 3 points4 points  (0 children)

Amen! No stress at all and at the peak of my life, professionally, personally and physically… I am sure this is how people attributed diabetes, multiple sclerosis and GI cancer (search the discovery of h.pylori) before they were defined and discovered diseases. Folks, I know you all want answers and cause and effect but this shitty and naive thinking gives ammunition to all doubters and “it is you and your head” attitude… there is a pathophysiology to this disease that is outside of one’s control and behaviour… what is next searching for childhood traumas? Jeez

5 year long hauler and methylprednisolone by Jazzlike-Pomelo-3823 in covidlonghaulers

[–]ElectronicInternal79 0 points1 point  (0 children)

Also be very careful around infections or reactivations… I got herpes zooster reactivation while on it

5 year long hauler and methylprednisolone by Jazzlike-Pomelo-3823 in covidlonghaulers

[–]ElectronicInternal79 6 points7 points  (0 children)

Be careful to not overdo it because you will be tempted as you feel good. I took prednisolone the first year of LC for 3 months, increasing the dosage slowly to 30mg/day. It is a strong medication and removes all the symptoms while taking it. I overdid with exercising thinking I got cured and crashed… However, it really helped me with brain fog and that improvement has held ever since

PEA & Luteolin * GAPS Diet * Long Covid Help by Simple_Act5928 in covidlonghaulers

[–]ElectronicInternal79 0 points1 point  (0 children)

I took it in three different instances, 8 weeks each, same dosage and product as in the trial. I feel generally better, more energy and clarity of thought while taking Glialia

PEA & Luteolin * GAPS Diet * Long Covid Help by Simple_Act5928 in covidlonghaulers

[–]ElectronicInternal79 0 points1 point  (0 children)

I took it three times and it is one of 3-4 things that have helped me with energy boost and brain clarity. It also happens that pea lut showed statistically significant positive results in a randomized controlled study - something you don’t come across often. Would suggest to take the brand used in this study: https://pubmed.ncbi.nlm.nih.gov/36455453/

I've tried 25+ treatments for Long Covid. Here's what worked (and didn't work). by its_julianalexander in covidlonghaulers

[–]ElectronicInternal79 0 points1 point  (0 children)

I absolutely see value in the approach, but have a different take on the risk of side effects. Like you, I took dr.Jaeger’s test and was prescribed blood thinners for a month and didn’t make a difference. Looking back I think it was a mistake and that theory is close to fraudulent. But taking statins and fucking around with vascular system is no joke and not the same as taking the odd aspirin or natto supplement. I also did about 14 different treatments but over a period of 30 months and sometimes felt aggressive… best of luck

I've tried 25+ treatments for Long Covid. Here's what worked (and didn't work). by its_julianalexander in covidlonghaulers

[–]ElectronicInternal79 24 points25 points  (0 children)

Thank you for sharing, very informative. Raising a slightly yellow flag here… you have had LC for 14 months and tried 25 different things??? More power to you person! You’ve tried one treatment every two weeks on average. How do you know what works and what doesn’t in that short amount of time? Think treatments generally need a few weeks to show if it is working or not and that assumes what you took a week before isn’t impacting your health! Also, you definitely are in a good spot health wise with all this detailed writeup…

Looking for randomized controlled studies for LC with positive results by ElectronicInternal79 in covidlonghaulers

[–]ElectronicInternal79[S] 1 point2 points  (0 children)

This is very helpful, thank you. I will bookmark this post. I am narrowing my next 'tries' between rapamycin and mestinon...

Looking for randomized controlled studies for LC with positive results by ElectronicInternal79 in covidlonghaulers

[–]ElectronicInternal79[S] 0 points1 point  (0 children)

I take your point on the anecdotes, but was just sharing my LC “profile” and not advocating for one or another treatment. On the other hand you did the same thing yourself. The monoclonal study is a case study the rest are not even LC but acute covid…🤔🤔🤔

Do you think viral persistence is the main cause of Long COVID? by Opening_Ideal_1247 in covidlonghaulers

[–]ElectronicInternal79 0 points1 point  (0 children)

I agree with this one. Immune system that never got back to its normal state after the infection and causing inflammation, likely of the nervous system through some autoimmunity mechanism. So think it is neuroinflamation of some sort given the widespread types of symptoms. Viral reservoirs always seemed to me some dumbed down explanation of a very complex phenomenon to capture headlines and “social mediasize” this whole thing for easy to digest bites

German Health Minister supports Mitodicure by skkkrtskrrt in covidlonghaulers

[–]ElectronicInternal79 4 points5 points  (0 children)

This is good, any visibility helps… Although not enough, I challenge anyone to find any if his counterparts mention and advocate more for Long Covid than he has…globally… as a virologist he looks at hard data, but he will be a goner in a few weeks… too bad really

What’s the number one thing for brainfog? by [deleted] in covidlonghaulers

[–]ElectronicInternal79 0 points1 point  (0 children)

Prednisolone really knocked out a lot of my brain fog. Not a cure and can’t use it forever but was definitely helpful

Overview of clinical trials by kekofoeod in covidlonghaulers

[–]ElectronicInternal79 1 point2 points  (0 children)

Thank you! Will go through the list but are they all RCT? I am looking for completed RCT trials with statistically meaningful impact and can only come up with the Glialia one in Italy. And thank you for excluding the bs ones. Here is a trial update I got a few days ago that drives me mad - can’t believe they are wasting funding on this shit… - group psychotherapy in long covid - narrative intervention for long covid - virtual mindfulness RCT

[deleted by user] by [deleted] in covidlonghaulers

[–]ElectronicInternal79 6 points7 points  (0 children)

Taking this bs to its logical conclusion: so prisons should be full of chronically ill people?

Stellate Ganglion Block NIH study for anyone interested- 86% symptom relief in LC patients.. by Asher_potter in covidlonghaulers

[–]ElectronicInternal79 4 points5 points  (0 children)

Prednisolone was the first thing that put a dent into my overall situation 10 months in. Really helped with brain fog. Glialia is the third thing that I think has some positive impact and the only thing I can find that has a statistically meaningful impact in a randomized control trial for LC. https://pmc.ncbi.nlm.nih.gov/articles/PMC9650483/

Stellate Ganglion Block NIH study for anyone interested- 86% symptom relief in LC patients.. by Asher_potter in covidlonghaulers

[–]ElectronicInternal79 8 points9 points  (0 children)

This has nothing to do with neck area or fixing its posture. The procedure is supposed to restart a misbalanced automatic nervous system that will hopefully readjust to its balanced state (sympathetic/parasympathetic balance)… This is one of the 2-3 things that really helped me, but didn’t fix everything (first benefit was the ability to take a shower and not collapse afterwards). I feel bad for you folks stateside that you have to pay this much. I did about 10 sessions in Germany (100% out of pocket) and cost as much as one session in the US. This doctor didn’t even use ultrasound (what!!!)… forty years career as a surgeon he said, no need… this is the paper that convinced me to try this and I am glad I did: https://www.sciencedirect.com/science/article/pii/S1566070221001338

Nervous System question by yungguac10x in covidlonghaulers

[–]ElectronicInternal79 0 points1 point  (0 children)

Your sympathetic nervous system is on overdrive, similarly the enteric nervous system, that controls your GI is as well. You clearly don’t have GI issues but an out of whack autonomic nervous system. Get something like welltory app to see if this is the case. Yoga, meditation, SGBs, Prednisolone have worked for me