Is Apheresis an effective treatment for Long Covid and ME?

[SWAlexander]

More help for POTS is coming. https://forums.phoenixrising.me/threads/pots-the-remarkable-condition.85987/

 

[ruben]

With all this talk about micro-clots I thought I'd go online and look up herbal treatments which are supposed to target this. Came across "Clean Macuna L-Dopa99%". So purchased them. This morning took first one. I'm a taxi driver and 3 or so hours after taking it came over feeling like I was going to faint and feeling nauseous. Anyone have any knowledge of this product. Thanks in advance.

 

[ruben]

Forgot to add it had passed in about 15 minutes

 

[Shanti1]

With all this talk about micro-clots I thought I'd go online and look up herbal treatments which are supposed to target this. Came across "Clean Macuna L-Dopa99%". So purchased them. This morning took first one. I'm a taxi driver and 3 or so hours after taking it came over feeling like I was going to faint and feeling nauseous. Anyone have any knowledge of this product. Thanks in advance.

Looks like the product contains plant-sourced L-Dopa which is the precursor to dopamine. I would think of that product more for mood elevation. I've taken L-Dopa containing macuna products before and had a strong reaction. Maybe check out products like Omega-3, nattokinase, pycnogenol, low dose aspirin, and bromelaine.

 

[lenora]

Has anyone actually been to Dr. Jaeger's clinic for the dialysis treatments? If so, do the symptoms stay away or return at a later date? This was a very informative review of both the treatment & a patient who had actually undergone it, a doctor which helps considerably. I'm going to check out the Cleveland Clinic site also. (listed immediately above).

Well, and would you believe that with more checking I found that Southwestern University here in Dallas, (discoverers of using statin drugs for cholesterol) can also provide this service. Very interesting.
All I'm missing now would be the outcomes for patients with ME/CFS....any feedback out there? Yours, Lenora

 

[Shanti1]

The Low Down on Venous Oxygen Saturation (SvO2)

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

• SvO2 is typically done on ICU patients either through the pulmonary artery (SmVO2) or a PICC line placed in the vena cava or subclavian vein (ScVO2). The pulmonary artery placement is the most accurate but, more often, it is taken from the PICC line because ICU patients have them already placed and pulmonary artery placement is very invasive. SvO2 is monitored daily in these patients.
• SmVO2 and ScVO2 range is 60-70% and 70-80% respectively
• Peripheral draws for venous oxygen saturation (SpVO2) are rarely done (but they can be) because they are not as accurate as SmVO2 and ScVO2
• Tourniquet use in a SpVO2 draw would not be expected to interfere with the SpVO2 reading unless the tourniquet was left on for an unusually long period (more than 3-4mins)
• A peripheral SpVO2 will typically read lower than a SmVO2 or ScVO2, however, any reading below 55% on SpVO2 is highly predictive of a low ScVO2
• 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

Here is a paper on how well peripheral venous oxygen saturation (SpVo2) correlates with the more commonly used ScVO2 drawn from a PICC line:
Relationship between Central and Peripheral Venous Oxygen Saturation and Lactate Levels: A Prospective Study
https://pubmed.ncbi.nlm.nih.gov/27210904/

Low SvO2 is an indication of low tissue perfusion, either due to capillary compromise or something like low blood pressure or heart failure.

 

[Shanti1]

We had discussed the abnormally low venous oxygen saturations earlier in the thread. I just looked back at my allegedly "normal" blood tests from my first hospital admission in Jan. (This was probably my first POTS/ME crash after slowly going off from my usual healthy form over Nov/Dec 2020).

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?

 

[perrier]

The Low Down on Venous Oxygen Saturation (SvO2)

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

• SvO2 is typically done on ICU patients either through the pulmonary artery (SmVO2) or a PICC line placed in the vena cava or subclavian vein (ScVO2). The pulmonary artery placement is the most accurate but, more often, it is taken from the PICC line because ICU patients have them already placed and pulmonary artery placement is very invasive. SvO2 is monitored daily in these patients.
• SmVO2 and ScVO2 range is 60-70% and 70-80% respectively
• Peripheral draws for venous oxygen saturation (SpVO2) are rarely done (but they can be) because they are not as accurate as SmVO2 and ScVO2
• Tourniquet use in a SpVO2 draw would not be expected to interfere with the SpVO2 reading unless the tourniquet was left on for an unusually long period (more than 3-4mins)
• A peripheral SpVO2 will typically read lower than a SmVO2 or ScVO2, however, any reading below 55% on SpVO2 is highly predictive of a low ScVO2
• 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

Here is a paper on how well peripheral venous oxygen saturation (SpVo2) correlates with the more commonly used ScVO2 drawn from a PICC line:
Relationship between Central and Peripheral Venous Oxygen Saturation and Lactate Levels: A Prospective Study
https://pubmed.ncbi.nlm.nih.gov/27210904/


Low SvO2 is an indication of low tissue perfusion, either due to capillary compromise or something like low blood pressure or heart failure.

Please explain peripheral draw. Do you mean from a vein in the arm or hand like a regular blood draw? Thanks in advance

 

[Gingergrrl]

This is a really helpful thread w/a lot of good info and I can't believe how fast it moves! I am just catching up w/it all now

I think the term arterial blood gases refers generally to tests for both arterial and venous blood oxygen levels. It also measures some other things.

I had an arterial blood gas test when I was in the hospital in 2014 (for a week on a cardiac unit) when they were trying to figure out what was wrong w/me. I'm pretty sure (but could be wrong) that it was just called "arterial blood gas test" and did not measure "venous blood oxygen level" but I could be wrong. I want to see if I can find the results of my test from 2014 so I can post here (even though I know it would not reflect my current status).

No the micro clots are removed by using the drug Heparin. But there are some similarities in the sense that blood is removed from the patient into a machine which filters the blood/plasma and then returns the "cleaned" blood to the body. So the Heparin does not actually go into the patient.

So would "plasmapheresis" be a type of "apheresis" (meaning that in both cases, the blood is removed from the body to be cleaned) except in apheresis, they clean the blood with heparin to remove micro clots but in plasmaphersis, there is no heparin used and the purpose is to remove pathogenic auto-antibodies (not clots)?

Yes I tried it and it did not help.

In your case, did you try it with the purpose to dissolve/remove blot clots or with the purpose of removing known pathogenic auto-antibodies (or neither)?

I was told I have antiphospholipid syndrome.

When you were given a diagnosis of antiphospholipid syndrome, did you test positive for the two antiphospholipid autoantibodies (Lupus Anticoagulant and Anti-Cardiolipin)?

Significant associations have been reported between these complications and the presence of antiphospholipid antibodies, notably the lupus anticoagulant and anticardiolipin antibodies.

This is what I am trying to learn more about b/c I tested positive for one of the autoantibodies (and was not yet tested for the other).

I checked some of the labs in the US and they don't run venous oxygen saturation (SvO2).

This was what I suspected, too. If you are able to find more info on this, please post it here or tag me (if you can and no worries if you can't)!

Also seeing that it is usually done from a central venous catheter, but I think it can be done peripherally as well.

This was what I was wondering, too (re: if the blood had to be taken from a central line vs. a peripheral IV).

A low SvO2 can signify low tissue perfusion. Basically, the tissues are not getting enough O2 so, even though arterial O2 looks normal, as the RBCs pass very slowly through the sludgy capillaries (or due to low BP, heart failure, or other causes of low tissue perfusion), the body extracts more O2 than normal from the blood to compensate for the low perfusion.

This is very helpful, too (and I Hope that I can retain it)! When I was having problems with tissue perfusion, it was during a period that my BP was extremely low (due to POTS and other factors).

@dylemmaz would you be willing to share where you had this test done and if it was a blood draw from the extremities? I'm would be interested in having it done myself, but seems the blood needs to be processed as soon as it is drawn.

I would be curious, too.

We had discussed the abnormally low venous oxygen saturations earlier in the thread. I just looked back at my allegedly "normal" blood tests from my first hospital admission in Jan. (This was probably my first POTS/ME crash after slowly going off from my usual healthy form over Nov/Dec 2020).

Remember the normal reference range for SvO2 is 60-80% (70% if it were taken from the internal jugular vein). Mine was from my right antecubital fossa (elbow level).

22% ! That's even worse than Dr. Khan's

Was this an arterial blood gas test or the venous oxygen saturation test? If I am understanding correctly, the blood draw in your case was from your arm (a peripheral blood draw). Thanks!

 

[Shanti1]

Please explain peripheral draw. Do you mean from a vein in the arm or hand like a regular blood draw? Thanks in advance

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

I'm pretty sure (but could be wrong) that it was just called "arterial blood gas test" and did not measure "venous blood oxygen level" but I could be wrong.

That is right, arterial blood gas-only do arterial.

This was what I suspected, too. If you are able to find more info on this, please post it here or tag me (if you can and no worries if you can't)!

Please see my post that is 3 above yours

This was what I was wondering, too (re: if the blood had to be taken from a central line vs. a peripheral IV).

Please see my post that is 3 above yours

 

[SNT Gatchaman]

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?

Well according to the two selfies I took at the time in ED (I'm sitting semi-reclined in the bed) and had been there a couple of hours, the monitor reads:

P 57, BP 135/93, SpO2 98%, RR 15
or
P 64, BP 126/85, SpO2 98%, RR 30

 

[SNT Gatchaman]

Was this an arterial blood gas test or the venous oxygen saturation test? If I am understanding correctly, the blood draw in your case was from your arm (a peripheral blood draw). Thanks!

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

 

[Canned]

In your case, did you try it with the purpose to dissolve/remove blot clots or with the purpose of removing known pathogenic auto-antibodies (or neither)?

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

 

[Rufous McKinney]

Could it be Giardia lamblia, never detected or even looked for giardiasis?

I've always wondered about Giardia...having drank water from creeks and springs in outdoor very remote places, many times....

 

[perrier]

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

Canned, did you do the procedure in Germany, under Scheibenbogen? She says there are positive results, but you are reporting something not quite in that area. Thanks.

 

[Mary]

I'm pretty sure (but could be wrong) that it was just called "arterial blood gas test" and did not measure "venous blood oxygen level" but I could be wrong.

That is right, arterial blood gas-only do arterial.

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

 

[GlassCannonLife]

Anyone else slightly worried that they'll commit as much as necessary to cure long covid, the treatment won't work for ME, and then they'll stop doing research because long covid was solved?

 

[SWAlexander]

With all this talk about micro-clots I thought I'd go online and look up herbal treatments which are supposed to target this. Came across "Clean Macuna L-Dopa99%". So purchased them. This morning took first one. I'm a taxi driver and 3 or so hours after taking it came over feeling like I was going to faint and feeling nauseous. Anyone have any knowledge of this product. Thanks in advance.

I tryed Macuna and meds with L-Dopa. With both, I had tremors a day later.

 

[Martin aka paused||M.E.]

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

 

[MonkeyMan]

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

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.