Is Apheresis an effective treatment for Long Covid and ME?

[MonkeyMan]

Looks to me like we urgently more patients to try this.

YES! Has anyone on this board tried "HELP" apheresis specifically??

 

[Gingergrrl]

Please see my post that is 3 above yours

I think you must've posted that post at the exact moment that I was typing my post (earlier today)! I am going to read through that next.

Yes, from your hand or arm like a regular blood draw.

So, to clarify, do you mean that the venous blood oxygen level can be drawn directly from a peripheral vein (and the results would still be as valid)?

Definitely venous. An arterial O2 saturation of 22% would be "incompatible with life" !

That's what I thought but was confused! So your venous oxygen test was from a peripheral vein in your arm? If so, I am very interested in having this test in the future (but would not do it if it involved anything more complex than a regular blood draw).

The goal was to remove autoantibodies (the one in the Scheibenbogen study).

Which autoantibodies did you test positive for prior to plasmapheresis? (if you are comfortable sharing)

@Gingergrrl - apparently you were right and I was wrong - thanks for the clarification @Shanti1 !

At this point, if I was right it was by pure chance LOL

 

[Gingergrrl]

I spoke with a friend of mine today who is an ER doc and learned the following:

@Shanti1 Now I have read through the posts that I missed earlier (or at least I think I have !) and I really appreciate you getting all of this info for everyone.

Peripheral draws for venous oxygen saturation (SpVO2) are rarely done (but they can be) because they are not as accurate as SmVO2 and ScVO2

So it sounds like it can be done but it is not considered as accurate?

If you want to measure your SpVO2, you would want to see a doctor as an outpatient who works in a hospital complex where they can do the draw and process the specimen immediately

That makes sense and I cannot imagine Quest or LabCorp having the capability to do a test like this without screwing it up. They have messed up many tests for me in the past especially things like ACTH that has to be handled in a very precise way.

That is super low. Hard to attribute it to microclots though if you had super low BP due to a POTS episode, do you know what your BP was like during this measurement?

Do you know if someone had a very low venous oxygen level, if it would be possible to determine WHY they had it? Meaning would it look the same regardless if it was due to micro clots vs. low BP, etc?

I know this is not the same but in 2014 I had an abnormality on an EKG that was part of a treadmill test (but no abnormality when I was lying flat for an EKG). The Cardio at the time labeled it as "normal" but when I saw a 2nd Cardio, he said that the abnormality was probably due to inadequate blood perfusion when I was standing due to my very low BP and severe POTS (at that time).

 

[SWAlexander]

Dr Jaeger called me... She has 7000 (!) patients on the waiting list

Wow. Maybe this the reason she is not answering my emails.

 

[SWAlexander]

WOW!! Not surprising though. Would be useful to find a list of centers that do HELP apheresis. I found
this list but it doesn't specify whether they do "HELP" apheresis specifically.

When I listed: https://forums.phoenixrising.me/thr...r-long-covid-and-me.85939/page-5#post-2373071 I hoped somebody gets in. Did you contact the Braun Clinik?

 

[junkcrap50]

I've found a doctor nearby who has done research using HELP Apheresis for LDL & cholesterol removal, but it was a decade ago. So, perhaps there are other doctors in the US who've done HELP paphersis in research and might be able (doubtful) to do it offlabel. Search "help aphersis" on pubmed & clinicaltrials.gov might list some doctors' names.

 

[SNT Gatchaman]

So your venous oxygen test was from a peripheral vein in your arm? If so, I am very interested in having this test in the future (but would not do it if it involved anything more complex than a regular blood draw).

Yes, and I would like to repeat for me also. I wouldn't go rushing into this test more generally though. It needs to be validated in studies first (e.g. long COVID vs "chronic" ME vs normal).

It's quite possible that only relatively recent patients might show this low venous oxygenation, even if the micro-clots are still present, as the body systems might adapt to the new normal. The invasive exercise test studies discussed in this HealthRising article showed half the patients had normal and half high venous oxygen saturations. This was attributed to poor oxygen extraction rather than the over-extraction I think we're suggesting here.

It may be that ultimately the SvO2 could guide patient's early recovery to avoid or at least identify long COVID, but that longer term (ME) patients would need an evaluation based on showing the micro-clots directly, rather than indirectly inferring them.

This is all early in the piece for this finding and it's so tempting for me to jump at this as being "it". I know there have been many disappointments over the years, but right now it feels "right" to me.

I was really unwell (although I've had worse crashes since) and during that hospital assessment, every single thing was normal, apart from that SvO2. I think it has to be a big clue as to what's going on.

 

[Reading_Steiner]

I'm going to ask the NHS for that test, In the meantime i'm considering whether to take aspirin and Lysine.

 

[Judee]

Ken Lassessen has a lot on his website about natural blood thinners. He says Boswellia is a "poor man's" heparin. I did post one of these pages earlier but here are some additional links where he lists natural blood thinners and talks a little bit about their different actions:

https://cfsremission.com/2019/08/25/an-alternative-model-for-depression-and-anxiety/

https://cfsremission.com/2015/09/08/thick-blood-supplements-for-cfs/

On this next one he said he switched to grape seed extract instead of aspirin because aspirin has too many risks:

https://cfsremission.com/2018/05/20/post-m-options-for-testing-for-coagulation-issues-defects/

Going off of aspirin suddenly increases the risk of heart attack and stroke by something like 37% (even 8 weeks later.)

 

[ChookityPop]

Yes, and I would like to repeat for me also. I wouldn't go rushing into this test more generally though. It needs to be validated in studies first (e.g. long COVID vs "chronic" ME vs normal).

It's quite possible that only relatively recent patients might show this low venous oxygenation, even if the micro-clots are still present, as the body systems might adapt to the new normal. The invasive exercise test studies discussed in this HealthRising article showed half the patients had normal and half high venous oxygen saturations. This was attributed to poor oxygen extraction rather than the over-extraction I think we're suggesting here.

It may be that ultimately the SvO2 could guide patient's early recovery to avoid or at least identify long COVID, but that longer term (ME) patients would need an evaluation based on showing the micro-clots directly, rather than indirectly inferring them.

This is all early in the piece for this finding and it's so tempting for me to jump at this as being "it". I know there have been many disappointments over the years, but right now it feels "right" to me.

I was really unwell (although I've had worse crashes since) and during that hospital assessment, every single thing was normal, apart from that SvO2. I think it has to be a big clue as to what's going on.

How can they find evidence of micro clots?
Would it be possible with a blood microscopy?

 

[Countrygirl]

 

[Countrygirl]

I hear that another 20 clinics have opened in Germany since Tuesday to give H.E.L.P. Apheresis treatment.

 

[Martin aka paused||M.E.]

I found sth interesting today. I wanted to see if I have CIRS. Spoiler: very unlikely. But I stumbled across this:

 

[lenora]

Hello @Shanti1.....and everyone else. I'm going to retrieve my personal file and check if I had an arterial blood draw. I'm quite sure I did as I had a heart attack.

Dr. Jaeger has 700 patients on a waiting list? That's incredible, although one of the items I read said they're open one day/wk., Monday to be exact. If this is the case, then they're missing a lot of opportunities for helping people in need.

I'm going to have to tread into this matter very lightly. My health is already rather bad, so I would only trust a research center (such as Southwestern here in Dallas) and who knows what that waiting list may be like?

Interesting to note that one person said the effects only lasted for one month....sorry, I'm not going through all of that for one month of good (hopefully) health. Still, this is as close as I've found to solving some of my immediate problems. The tip-off: The lowering of the LDL cholesterol. Even with a statin I can't get it lower....something's definitely not right. I'm taking heparin for the clotting problem, and have a carotid stent on one side and have to get one for the other. Thanks so much for all of the great info. Yours, Lenora.

 

[SWAlexander]

Martin, your mmp-9 test results are very low. How do you interpret this compared with your symptoms?
I like to believe that Dr. Jaeger´s aphereses would be good.
Lp-PLA2 - Sorry only in German: https://www.medica.de/de/News/Archiv/Lp-PLA2_als_unabhängiger_Marker

 

[Shanti1]

This study shows the pwME at rest tend to have NORMAL venous oxygen saturation SvO2

The invasive exercise test studies discussed in this HealthRising article showed half the patients had normal and half high venous oxygen saturations. This was attributed to poor oxygen extraction rather than the over-extraction I think we're suggesting here.

It may be that ultimately the SvO2 could guide patient's early recovery to avoid or at least identify long COVID, but that longer term (ME) patients would need an evaluation based on showing the micro-clots directly, rather than indirectly inferring them.

I completely agree. I pulled the full-text study written about at Health Rising and it ALSO took an at-rest baseline venous oxygen saturation in the pulmonary artery (SmVO2) reading. The at-rest readings in those with ME/CFS were NORMAL, as in between 60-70%. It was only during exertion when the SmVO2 reading became abnormal (higher than it should be), showing low oxygen extraction.

Unexplained exertional intolerance associated with impaired systemic oxygen extraction
https://link.springer.com/article/10.1007/s00421-019-04222-6

This table shows SvO2 at rest in people with exertional intollerance. The the Poor Serum Oxigen Extractors (SOEL and SOEH) also had a diagnosis of ME/CFS. (HV stand for hyperventilators and NL stand for Normal Subjects)

According to this study, pwME do NOT normally have low venous oxygen saturation.
Personally, I am now not so inclined to pursue having this test done.

Of course, if someone has it done and the reading is high or low, that is still useful information, but I would caution not to jump to the conclusion that a low reading is due to resistant microclots like Long-COVID patients. I would be more inclined to look at low blood pressure, low RBC deformability, endothelial disfunction leading to capillary resistance, and "sticky blood" due to the tendency toward hypercoagulation, which are all things that have evidence of occurring in ME/CFS.
@SNT Gatchaman @Gingergrrl

 

[ChookityPop]

I can microscope my blood next week. They usually look for borrelia etc. So I assume they should be able to see the micro clots, when they can see borrelia bacteria, right?

borrelia spirochetes is about 0.3 μm in width and 5-10 μm in length.

 

[Shanti1]

Ken Lassessen has a lot on his website about natural blood thinners. He says Boswellia is a "poor man's" heparin. I did post one of these pages earlier but here are some additional links where he lists natural blood thinners and talks a little bit about their different actions:

https://cfsremission.com/2019/08/25/an-alternative-model-for-depression-and-anxiety/

https://cfsremission.com/2015/09/08/thick-blood-supplements-for-cfs/

On this next one he said he switched to grape seed extract instead of aspirin because aspirin has too many risks:

https://cfsremission.com/2018/05/20/post-m-options-for-testing-for-coagulation-issues-defects/

Thanks Judee, really helpful. Have you tried some of these supplements and found that they helped you?

I found sth interesting today. I wanted to see if I have CIRS.

I think you know, CIRS usually has high MMP-9. I'm also curious if you relate your low reading to any of your symptoms.

 

[perrier]

This study shows the pwME at rest tend to have NORMAL venous oxygen saturation SvO2




I completely agree. I pulled the full-text study written about at Health Rising and it ALSO took an at-rest baseline venous oxygen saturation in the pulmonary artery (SmVO2) reading. The at-rest readings in those with ME/CFS were NORMAL, as in between 60-70%. It was only during exertion when the SmVO2 reading became abnormal (higher than it should be), showing low oxygen extraction.

Unexplained exertional intolerance associated with impaired systemic oxygen extraction
https://link.springer.com/article/10.1007/s00421-019-04222-6

This table shows SvO2 at rest in people with exertional intollerance. The the Poor Serum Oxigen Extractors (SOEL and SOEH) also had a diagnosis of ME/CFS. (HV stand for hyperventilators and NL stand for Normal Subjects)
View attachment 45366


According to this study, pwME do NOT normally have low venous oxygen saturation.
Personally, I am now not so inclined to pursue having this test done.

Of course, if someone has it done and the reading is high or low, that is still useful information, but I would caution not to jump to the conclusion that a low reading is due to resistant microclots like Long-COVID patients. I would be more inclined to look at low blood pressure, low RBC deformability, endothelial disfunction leading to capillary resistance, and "sticky blood" due to the tendency toward hypercoagulation, which are all things that have evidence of occurring in ME/CFS.
@SNT Gatchaman @Gingergrrl

Shanti, your post is pertinent and warrants further thought and investigation. We don't seem to have heard from any CFS/ME doctors regarding what is exploding in the LC communities regarding aphorises.

 

[Judee]

Thanks Judee, really helpful. Have you tried some of these supplements and found that they helped you?

The boswellia helps when I have my swollen brain feeling. I also need licorice everyday though I'm not sure it's because it is thinning my blood.

Alpha Lipoic and Bromelain make me feel worse. The Bromelain is also supposed to break down bio films so maybe that's why.

It's been a long time since I've tried the others. I do think I remember feeling slightly better on the grape seed and a bit over revved (heart effects) on the co10, gotu kola and ginsing. (They were taken separately, not together.)

I have not tried the Nattokinase, Lumbrokinase, or Serrapeptase.

Although I do have a unopened bottle of Serrazimes here that I have been dragging my feet on trying. It's also suppose to be a biofilm breaker and I've not been doing well with herx reactions. They've been have been a little scary lately.