My Comprehensive Blood/Saliva/Urine/Stool Results - And an Idea

[tunn3l]

Hello! I’m a Long Covid/CFS sufferer for 2 years now. I am also actively researching possible biomarkers and treatments on my own - to the best of my possibilities. Check my profile for more background.

My Symptoms are:

• brain fog
• fatigue
• problems staying asleep
• bloating (possibly gut disbyosis)

My Tests so Far

I want to share with you my blood/saliva/urine/stool test results so you can compare and possibly learn from them. You can find theme at this Google Drive link.

(the tests are in german, the date format is dd.mm.yyyy)

Current Treatments

Just because it could be of interest

• Famotidine 40mg morning and before bed
• Stress reduction through mindfulness, pacing, and moving into a less noisy environment (for sleep)
• reishi mushroom
• lions mane
• Probiotics
• light exercise (running 20 to 30 min)

A Survey Idea

How about making a survey relating symptoms to biomarkers measured? These results could help people figure out what may help them, if they can find people with similar biomarkers and symptoms and see what has helped them.

Although it would be a challenge to select what biomarkers to include in the study and find enough people who measured them.

Ps

Hey and if anyone has an idea for treatment based on my blood results, I would be more than happy to hear from you!

Cheers

[glenn_chan]

@tunn3l

How about making a survey relating symptoms to biomarkers measured? These results could help people figure out what may help them, if they can find people with similar biomarkers and symptoms and see what has helped them.

There’s something sort of like that already.

There’s this: persistent symptoms survey #2

That survey asked about symptoms (65 or something). it has a free-form question for test results that came back positive.

Also see the results from the Treatment Outcomes Survey… the whole targeted treatment thing generally doesn’t seem to work.

Phenotypes / different types of Long COVID???

See the post below for a deep dive.

There are different types of long haul patients but

[image] There are different types of long haul patients, but it’s not what you think. Right now, any medical differences between patients are being overshadowed by miscommunication between patients, doctors, and researchers. As I have conducted multiple patient-led surveys, I know that miscommunication happens. That miscommunication is the worst when the survey is poorly designed. It comes down to: People having different ideas about what words mean, e.g. “brain fog” could refer to memor…

Right now it looks like most patients overlap heavily. (From a medical perspective.
There are big differences in terms of how people report their symptoms.)

@tunn3l

Hey and if anyone has an idea for treatment based on my blood results, I would be more than happy to hear from you!

Bruce Patterson’s IncellDX group has tried that with their cytokine panel testing. In practice, their concierge doctors often ignore the test results and just recommend statin+maraviroc anyways even if the test results don’t call for it. The cytokine stuff never worked for ME/CFS by the way.

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At the end of the day, it would be amazing if there was testing that helps guide treatment. But for the most part, it doesn’t exist right now.

Eventually more and more NGS (next generation sequencing) testing will be done on patients and we’ll see if that technolgy is useful. It’s relatively cheap and is getting cheaper very quickly.