Is Apheresis an effective treatment for Long Covid and ME?

[Countrygirl]

How do you explain to a stubbern 36 y.o. auto-mechanc (in school to make his master) with visable symptoms since May for muscle weekness (arms and legs), that he needs a blood test?

This is how did it.
Your car looks good from the out side. Your car runs well until someone puts a pound of sugar, or something like it, into the tank. What would you do, I asked?
His answer was technical but to the piónt.
Yes I said, and blood is the gasolin for our body. Checking for blood clots, or have at least a D-Dimere test, cannot harm.
Unfortunatly he have not seen a doctor yet and his symptoms getting worse.

Unfortunately, the blood tests do not detect these micro-clots. Asad said his were clear, but his blood was so full of tiny clots that it clogged the machine a number of times.

 

[Martin aka paused||M.E.]

Different outcomes.some got relief,some got worse,side effekts are detox symptoms,..but non healed..and the costs for not knowing the outcome are horrendous.but who can afford it,go for it. Same with sanazon therapy,there was a woman on German tv who healed completely with it,and others in our group tried it too,but no success...

Was ist H.E.L.P. apharesis ?

 

[Irat]

Was ist H.E.L.P. apharesis ?

Puh I don t martin

 

[dylemmaz]

He mentioned a venous oxygen saturation test which was diagnostic for Long Covid - easy to do it seems - his level was 32, and normal was 65-75 - @Countrygirl !

i had an arterial blood gas test done that showed my venous blood oxygen saturation levels were 36%. the reference range for the lab was 70-80%. maybe this is the test he is talking about? having low venous blood oxygen saturation levels certainly lines up well with the tissue hypoxia theory

@perrier @Martin aka paused||M.E.

 

[SWAlexander]

Puh I don t martin

"Help Apheresis Dr Beate Jaeger" is the German TV show titel:

click on the CC button to enable subtitles. With the settings button you can then choose the language

 

[SWAlexander]

Unfortunately, the blood tests do not detect these micro-clots. Asad said his were clear, but his blood was so full of tiny clots that it clogged the machine a number of times.

Yes. He mentioned toward the end (video 2) the usual blood tests such as fibrinogen (protein) and D-Dimere.

https://twitter.com/i/web/status/1451492874768551936

The whole panel would be: Blood Tests for Clotting Disorders (very rarely ordered) if not demanded.

• APTT (Partial Thromboplastin Time) This test is used as a screening test to evaluate bleeding disorders. ...
• PT (Prothrombin Time) ...
• von Willebrand Antigen Test. ...
• Ristocetin (Rist oh SEE tin) Co-Factor. ...
• Factor Assays. ...
• Platelets. ...
• Platelet Aggregation Testing. ...
• Multimers.

 

[godlovesatrier]

Can this be obtained like ozone blood based therapy privately in the UK? If so does anyone know how much it costs?

 

[godlovesatrier]

Also someone mentioned in another thread that a low esr of say 2 does confer sticky blood. Does anyone know if this is actually true?

 

[pattismith]

"HELP is a highly selective kind of therapy. Atherosclerotically effective risk factors such as lipoprotein (a), fibrinogen, and inflammatory factors are being removed additionally apart from LDL cholesterol."

Does it mean that ME/CFS patients who were treated with this kind of apheresis had high fibrinogen/LDL or other inflammatory markers?

 

[godlovesatrier]

https://www.bbraun.com/en/products-and-therapies/extracorporeal-blood-treatment/apheresis.html

H.E.L.P. LDL Apheresis
Plasma-proteins and blood lipids can be adsorbed by an adsorber or precipitated from the plasma by means of modulation. Plasma modulation is better than plasma adsorption and full-blood adsorption in terms of compatibility with a patient's prescribed medicines. H.E.L.P. lipoprotein Apheresis is performed by way of plasma modulation. The abbreviation H.E.L.P. stands for

H eparin-induced
E xtracorporal
L ipoprotein/fibrinogen
P recipitation.

In a separation process, the plasma in the patient's blood is segregated from its blood cells. The separated plasma is mixed with an acetate buffer saturated with heparin. This lowers the plasma's degree of acidity (pH value) to 5.12, causing the LDL cholesterol, Lp(a) and fibrinogen to drop selectively out of the plasma. Together with the heparin additive, the plasma lipoproteins form insoluble precipitates which can be removed from the plasma in a single filtration stage. Unused surplus heparin is held back in a separate adsorber, and bicarbonate ultrafiltration is used to restore the purified plasma to the physiologically acceptable level. The selectively treated, purified plasma is then remixed with the remaining blood constituents and supplied back to the patient. During H.E.L.P. Apheresis, these four steps (plasma separation, precipitation with subsequent filtration, heparin adsorption and ultrafiltration) are performed by a single device, the PLASMAT Futura.

 

[SWAlexander]

"HELP is a highly selective kind of therapy. Atherosclerotically effective risk factors such as lipoprotein (a), fibrinogen, and inflammatory factors are being removed additionally apart from LDL cholesterol."

Does it mean that ME/CFS patients who were treated with this kind of apheresis had high fibrinogen/LDL or other inflammatory markers?

We will see when the papers come out. How many ME/CFS`s have had a full blood panel? Doctors just don´t do it. I got quite a large one, just because I demand it.

 

[perrier]

"Help Apheresis Dr Beate Jaeger" is the German TV show titel:

Interessant. Vielen Dank. I noticed the reference to burning in the arms, as a sign of oxygen insufficiency. My daughter has burning very very often, in the arms and the legs. Also, interesting the other doctor, who is worried that this treatment may remove needed substances. He , however, did not name the other treatments he said were available. Thanks SWAlexander for posting.

 

[perrier]

i had an arterial blood gas test done that showed my venous blood oxygen saturation levels were 36%. the reference range for the lab was 70-80%. maybe this is the test he is talking about? having low venous blood oxygen saturation levels certainly lines up well with the tissue hypoxia theory

@perrier @Martin aka paused||M.E.

Thanks Dylemmaz for this information. This is a rather simple test. I wonder if folks at OMF have done this on the severely ill patients they are looking at. But it was not clear to me which test Dr Khan meant. Thanks again.

 

[Abha]

Can anyone find the papers from either the 80s or 90s which claimed that we had 'sticky' blood, please?

I know MERUK published two papers which revealed that the endothelium of our blood vessels was severely damaged while others described how our red blood cells are too rigid to pass through the capillaries.

When I had some genetic testing a year ago, they notified me that I was prone to a blood clotting disorder. I have been having superficial blood clots blocking blood vessels since I was 15, and in recent years TIAs and strokes.

I wonder if others had such evidence of having 'sticky' blood, Hughes Syndrome/Antiphospholipid Syndrome?

@Countrygirl...back in 70s/early 80s when my illness was misdiagnosed and I had a severe Ativan addiction problem which eventually led to me being locked up(poisoned!) .I had a major convulsion at that stage and latter because I had bitten my tongue/mouth severely ,one day after that (in same ward) blood just poured from my mouth.It was very sticky(remark made by a nurse) and it appeared as whitish lumps in the blood.This treatment looks promising but it is unlikely that the NHS will provide such treatment.

 

[Abha]

This may be of interest on the subject of "Sticky blood."I listened to a programme on sticky blood in past couple of years (probably on Radio 4).I think it had to do with Covid but I can't recall if it was this programme or another one. Anyhow, I found it interesting and informative.

BBC Radio 4:

Sticky Blood:From clots to Covid-19

https://www.bbc.co.uk/sounds/play/m000mr5s

Thrombosis UK was delighted to support the programme and ensure a patient representatives was included. Edward joined Prof Beverley Hunt OBE, Prof Roopen Arya, Dr Rachael Hunter, Dr Dan Horner and others were to share information and insight into thrombosis.

 

[Mary]

Dr Khan says that the oxygen saturation was low in his case, and he says that a simple monitor can detect the levels. These monitors cost very little and are available on every amazon. But from having used this monitor on our family member, the saturation was not really in the critical zone as Dr. Khan had.

Is it really the normal pulse O2 oximeter he talks about? Because afaik that’s being used in every clinic so that would have been discovered immediately… in general when you have a very low oxigen level you get intranasal O2 or being referred to the ICU

I'm almost positive the test Dr. Khan had done was not the same as using a pulse oximeter - Dr. Khan said he had a venous oxygen saturation test, his result was 32 out of a range of 65 - 75, and @dylemmaz said he had an arterial blood gas test done, with a very low result, 36% out of a range of 70 - 80%. @dylemmaz - I'm presuming your arterial blood gas test was done with a blood draw and not a pulse oximeter - is this correct?

Pulse oximeters use different measurements - usually the results are in the 90's and if they're below 95, you start getting worried. If you had a result of 36 on a pulse oximeter, you'd be dead.

I wonder if a doctor's office could do the venous oxygen or arterial blood gas test? I think getting this test done would be a very good start to finding out if one might be a candidate for this therapy, and it just would provide some very good information anyways.

 

[Mary]

I think apheresis is either a form of or very similar to dialysis. I tried to find the difference between the two and couldn't. I would think that any machine used for dialysis could be used for apheresis, though I don't know for sure. I know a doctor who does something called ozone dialysis - they remove all your blood and filter it and bathe it with ozone, and I'm wondering if that machine could be used for the HELP apheresis. I'm going to pass on this information to him and hopefully get a response! His ozone dialysis is I think around $400 (I forget exactly - I haven't tried it)

 

[keepswimming]

The video called the test "venous oxygen saturation test", I looked it up and found this article which I believe must be talking about the same thing? Correct me if I'm wrong!
The definition it gives:
Mixed venous oxygen saturation (SvO2) is the percentage of oxygen bound to hemoglobin in blood returning to the right side of the heart. This refects the amount of oxygen "left over" after the tissues remove what they need.

I thought it might be notable that the article goes on to talk about ATP production in connection with this. But there are much cleverer people on this forum who will understand it better than me!

 

[SWAlexander]

.@doctorasadkhan just told the largest TV network in the world @BBCWorld & @BBCNews - 'It is a myth that ME is a psychological illness'.

https://twitter.com/i/web/status/1451564513682145306

 

[Abha]

Can anyone find the papers from either the 80s or 90s which claimed that we had 'sticky' blood, please?

I know MERUK published two papers which revealed that the endothelium of our blood vessels was severely damaged while others described how our red blood cells are too rigid to pass through the capillaries.

When I had some genetic testing a year ago, they notified me that I was prone to a blood clotting disorder. I have been having superficial blood clots blocking blood vessels since I was 15, and in recent years TIAs and strokes.

I wonder if others had such evidence of having 'sticky' blood, Hughes Syndrome/Antiphospholipid Syndrome?

@Countrygirl...Re 1980s/90 papers

The late Dr Les Simpson(New Zealand) did work on blood(sticky?) in 1980/90s and connections to ME &CFS. .He died in 2015.Here is a link...
https://www.investinme.org/ArticleJ21-Role-of-Impaired-Capillary-Bloodflow.shtml

Cort Johnson also wrote this...
“Sticky Blood” – Antiphospholipid Syndrome, POTS, Chronic Fatigue Syndrome and Fibromyalgia – The Dysautonomia Conference #4
by Cort Johnson | Aug 15, 2018 ...Here is the link..
https://www.healthrising.org/blog/2...ts-chronic-fatigue-syndrome-and-fibromyalgia/