Tamara
@chydorina
+ Tess
@ales_frost
are scientists + patients who improved from severe
#MECFS
after taking antibiotics
Our aim w/
@remissionbiome
is to look at how modifying the microbiome can shift the baseline in
#MECFS
Please consider donating:
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Replies
1. The idea for
@remissionbiome
came from both of us experiencing a temporary remission after taking a mix of antibiotics (& in Tamara’s case, probiotics). While remission was fleeting, afterwards, our baselines improved.
Our aim is to recreate this event + understand it.
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2. There are many possible hypotheses for what might have happened during our temporary remission events, but many follow: Change in gut → mass neuroglia homeostatic event → sudden ⏬ in sickness response
We are continually adding ideas to this graphic:
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3. We will take AmoxClav, probiotics, prebiotics, postbiotics, & exogenous ketones during our experiment.
Before, during (if a remission event happens), & after we will test with
@biomesight
@ProdromeScience
@imyoohealth
@DutchTestLab
@siphoxhealth
Edge lactate meters +
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4. While we both only experienced short-term remissions (2 days for Tess & 4 hours for Tamara), we experienced an ⏫ in baseline function that was very significant. Tamara went from Severe to Moderate (bedridden to walking) & Tess went from Severe/Moderate to Moderate/Mild.
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5. While temporary remission is the immediate goal, it is not the ultimate goal: which is a lasting shift in baseline function, one that might even be kicked up a notch a few times with repeated temporary remissions.
(Thanks to
@winstoncb
for creating this graphic for us!)
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6. Read more about our experiences:
Want to get involved? DM us for more info or donate to .
We've been blown away by people helping us. 🙏to
@NataliaHodgins
for helping to put together this thread!
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@PavelSnajdr
@remissionbiome
We haven't started a list yet of follow up experiments (but they are always in the back of our minds.) We're focused on goal
#1
right now of proving that we can actually recreate one of these remission events.
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@remissionbiome
@chydorina
@ales_frost
I have two teenagers 5 years into their ME/CFS journey. Both housebound. Really interested ib your work and would love to know more.
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@remissionbiome
@chydorina
@ales_frost
Your remission didn't last. It may have cleared a few contributing bacteria. The target is the nervous system. Try 5mg oxy. Works like a charm in 20-30 mins. If successful I will contribute to THAT study.
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@remissionbiome
@chydorina
@ales_frost
5.5 years ago, I had EBV. I had subsequent ear infections and every time I get antibiotics, my Cfs seemed to go into a sort of remission. I definitely think there is something to this. Only certain ABX gave me improvement in my sx. Amox/clav every darn time.
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@remissionbiome
@chydorina
@ales_frost
@VitalikButerin
would be open to donating? I know you have already donated a lot to long covid already! Thank you 🙏
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@remissionbiome
@chydorina
@ales_frost
Thank you for doing this. From another Dr. who lost everything, and losing hope, to M.E. Four years in the same room, ten in the house, five still trying to have a life. It’s brutal. Good luck to you both
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@remissionbiome
@chydorina
@ales_frost
My friend with EM has been a 3 month antibiotics round to rule out Lyme. It did nothing but more digestive issues.
Are you sure it's not Lyme? Or SIBO.
But there is surely something wrong with the PwME's gut. Best of luck. Butyrate (Tributyrin) will help.
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