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Felicia R's avatar

You might want to listen to the”POTScast” episode 127, available on Spotify- very interesting interview with Dr Federowski, worlds foremost leading researcher on POTS - plasma proteins in POTS patients are substantially different than control subjects, causes microclots. He’s also researching LC/POTS link. I’ve found the POTScast to be extremely informative, helpful- especially since LC, POTS, MCAS, me/CFS are all sort of intertwined and overlap. Highly recommend!

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Brandon's avatar

Appreciate the tip, will do!

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Amy Engebretson's avatar

Thanks for the tip! I’m going to check out POTScast. You should also definitely check out the ECHO webinar referred to above--the research summaries on microclots and plasma proteome are presented by the researchers who did those studies. Really fascinating. Also discussion of potential treatment with triple therapy down the road.

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Megan Fraser's avatar

There appears to be so many studies going on, albeit perhaps small and underfunded. When government agencies recognise the problem and invest in it, we might have some real answers.

It’s very difficult being left without recognition, support or validation.

Do you think, from your vast readings of all the research papers, that they will find an answer or treatment that will be accepted and supported by doctors?

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Brandon's avatar

I think that my largest take away from writing this newsletter is that federally funded scientific research works but s a super slow process. My guess is that we have clinical trials for repurposing drugs done before we get a good idea behind the mechanisms of LC.

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Amy Engebretson's avatar

There have now been several randomized controlled clinical trials out of Israel investigating HBOT (hyperbaric oxygen therapy). All have shown a significant difference. It does take a lot of time and money, though, and can be difficult to access the treatment. For me, I did it daily for an hour and a half for 2-4 weeks, at high pressures (as in the Israeli studies). My Long Covid is pretty severe, and I definitely made improvements with it.

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Brandon's avatar

Good to hear about your improvements! I have been wanting to give it a try but it seems like a huge time commitment.

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Annette Greer's avatar

Thank you for covering this topic!

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Megan Fraser's avatar

Thanks for your response Brandon.

While treatments seem urgent to us that are suffering, it is a slow going process..

I don’t think there will be a one size fits all either so identifying biomarkers would be most beneficial. But I think you’re right, might just be a trial and error of different treatments.

I take antihistamines. I have been slowly improving. My doctor said, there’s no evidence to substantiate their benefit. I responded there no evidence to suggest they don’t help either.

I am able to remain hopeful by reading people’s recovery stories, seeing actual research being done and celebrating my successes along the way. Hope is essential, especially as many of us also have children suffering long Covid also. Menopause was once considered hysteria….. so medicine has certainly come a long way, in a reasonably short time.

I’m positive that eventually there will be much more understanding but it’s the tricky part when you’re waiting in the middle.

Hopefully we will all just heal in our own time and this will one day be a distant memory.

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