Martin aka Paused and H.E.L.P treatment

halcyon

halcyon

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Martin aka paused||M.E. said:
My LDL-Cholesterol is high. My potassium very low.
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Same pattern here over time. LDL mildly elevated, HDL normal, triglycerides normal, total cholesterol normal. Never figured out what that was about.

Low potassium is A Thing in ME for sure. Both total body potassium (Burnet et al., 1996; Wirth & Scheibenbogen, 2021) as well as blood levels (Baklund et al., 2021). I've had it since literal day one, and numerous times throughout my illness; it typically occurs when I'm doing much worse. I was hospitalized for over a week a few years ago and I was hypokalemic the entire time, despite being given prescription doses of potassium daily.

My theory is that perhaps it's due to clonal expansion of immune cells due to the chronic immune activation of ME. The immune cells could be sucking up a bunch of potassium out of the bloodstream as they proliferate, and since body levels are already so low, it easily causes hypokalemia. The low total body potassium part is harder to explain. There's only so many places it can go, into cells, bone, or out of the body via the kidneys. The latter would be unexpected as that's controlled by aldosterone, and aldosterone is thought to be low in ME, not high (renin-aldosterone paradox). Something similar is seen with phosphate, although this isn't published about to my knowledge, nor is it routinely tested as far as I can tell.
 
P

perrier

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Countrygirl said:
This is a new video where Asad and Prof Pretorius are interviewed by a rather annoying interviewer.

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The interviewer would cut off Asad and Resia unnecessarily. I didn't really like the format of this interview. Dr. Pretorius, the gifted Dr. Pretorius, hardly was given enough time. Anyhow, they did their absolute best and included the maximum info they could. Worth a watch.
 
Akasha

Akasha

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"Martin aka paused||M.E. said:
Yes they did. I'm the alien without.
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Hi Martin,

Are you having the same meds you had last time for transport? I'm not suggesting you don't have them, it might be impossible to move without them. I'm just curious if Jaeger told you anything else regarding your theory of the meds affecting your coagulation temporarily.

I think they are checking the plasma from every patient now with fluorescence. Maybe they can tell you if they found clots or lipid droplets or different things in other ME patients, you might not be the only one!

Send them all our love and bring some news!
I really hope you see benefits from apheresis this time.
 
SNT Gatchaman

SNT Gatchaman

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Countrygirl said:
This is a new video where Asad and Prof Pretorius are interviewed by a rather annoying interviewer.
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perrier said:
I didn't really like the format of this interview. Dr. Pretorius, the gifted Dr. Pretorius, hardly was given enough time. Anyhow, they did their absolute best and included the maximum info they could.
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I'm extremely enthusiastic about the micro-clot theory, though I think there's still much to demonstrate and learn. Eg we don't yet know what micro-clots represent or why they form. Are they proven to be circulating in vivo or is the evidence merely pointing in that direction? Is the disorder immunothrombosis, that requires fixing the immune- side?

I actually thought the interviewer was good. She certainly didn't make it easy for the interviewees to get their points across of course, and the format does not lend itself to conveying complicated information in-depth or with nuance. The interviewer seemed appropriate - emphasising this is just a theory at this stage and conscious of protecting a large and vulnerable audience. Although I found watching it uncomfortable, I would prefer more journalists to have this level of sophistication and skepticism.

Yes, the research team are pushing hard, perhaps a bit more than the evidence supports at this early stage. I think that is a reflection of the position biomedical research into LC and ME has found itself - having to forcefully overcome decades of B(P)S dogma. I support the research team 100% and I do think this will contribute major insights into both LC and ME.
 
Marylib

Marylib

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Good luck @Martin aka paused||M.E. Hope the talk went well with not too much payback for the energy you spent. You may be the 'alien' without the substance they are looking for, but you are an important part of the puzzle - so thanks for participating. @Treeman I wonder about all that too, but how can this process remove auto-antibodies? I am not doubting it - just wanting to understand. I still have hopes that BC007 will turn out to help the Long Covid and old-timer ME community too.
 
Akasha

Akasha

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Treeman said:
Just a thought. What if its the removal of the auto antibodies ad cytokines that help and not the removal of micro clots?
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In this case, other apheresis types (like immunoadsorption) would have worked with a big cohort, and that's not the case.

IMHO what makes help interesting is that it removes viral particles, coagulation proteins, lipids and autoantibodies. It's useful with different problems at the same time.
 
halcyon

halcyon

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Martin aka paused||M.E. said:
I’ll meet Jaeger and Asad tomorrow. Any questions?
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I'm sorry I've been too sick to keep up with these lines of research, and your story Martin, but I had a general question for you or anyone that might know.

Are any of these doctors/researchers looking at circulating immune complexes at all? CICs were a big fad in immunology research many decades ago, but then seemed to fall out of fashion. They were looked at in ME research back then, and researchers did find circulating immune complexes in ME patients (specifically enterovirus-related complexes in one case) (Milton et al., 1991; Yousef et al., 1988). I'm wondering if any of these researchers are or would consider looking at them again, and I'm also curious if this H.E.L.P. treatment is able to filter out circulating immune complexes. CICs are interesting as they can have wide ranging effects, for example causing inflammation when they deposit in tissues, or even modulating immune function in numerous ways (Wang & Ravetch, 2015).
 
Pyrrhus

Pyrrhus

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halcyon said:
Are any of these doctors/researchers looking at circulating immune complexes at all?
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I don't want to take this thread off-topic, but I have often wondered about circulating immune complexes (CIC) too. Especially CICs containing IgM antibodies, as IgM antibodies should generate much larger CICs than other types of antibodies. I have also wondered if the presence of IgM CICs might be related to selective IgM "deficiency". (a condition recently mentioned in another discussion.)
 
Marylib

Marylib

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This lecture finally answered many of my questions. But I still don't understand how manual extraction of the clots deal with the auto-antibodies, as some here have discussed - except that by removing the damaging plaques created by the spike protein, the production of auto-antibodies would cease? The comments are instructive too, because people tell you exactly which meds they were prescribed in the clinic (if there are no contraindications to anticoagulant and platelet dissolving drugs.) It reminds of of the cryptic 'something in the blood' that was popular for awhile in terms of ME/CFS. All the nasty stuff is hidden in that mass of plaque unless you get the TEG mapping to detect the dastardly villain who can wreak havoc all on his own. I guess other viruses can do and have done the same, but no one connected the dots yet? Have we all been too busy looking upstream and downstream? And since it's mostly women with long term symptoms, well - enough said.
 
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