Is Apheresis an effective treatment for Long Covid and ME?

SWAlexander

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I wonder what is the difference between Heparin and Xarelto 20 mg. Yesterday, blood was taken at the endocrinology lab. I´m taking Xarelto 20 mg since May this year and it looks like there is no difference. My blood remains to be very thick. My endocrinologist believes I should be on hydrocortisone meds. She suspects acute cerebrospinal fluid (CSF) inflammation, the reason for brain fog besides low cortisol thrombosis, and Urtikaria.
 
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GlassCannonLife

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I wonder what is the difference between Heparin and Xarelto 20 mg. Yesterday, blood was taken at the endocrinology lab. I´m taking Xarelto 20 mg since May this year and it looks like there is no difference. My blood seems to be very thick. My endocrinologist believes I should be on hydrocortisone meds. She suspects acute inflammation, the reason for brain fog.

Have you had morning fasted ACTH and cortisol tested?

Just looked it up and xarelto is rivaroxaban, a direct factor Xa inhibitor (inhibiting both free and bound factor Xa). It works similarly to (from wikipedia) "unfractionated heparin (UFH), low molecular weight heparin (LMWH), and fondaparinux, [which] also inhibit the activity of factor Xa, indirectly, by binding to circulating antithrombin (AT III)".

The anticoagulant I took, enoxaparin, also inhibits this clotting factor so it seems to be the main method of treatment for clotting aside from vitamin K antagonism (not an expert by any means have just looked up a few of these drugs recently).

Heparin is apparently referred to as UFH when it has not been separated into the low molecular weight fraction. UFH also purportedly has slight activity against clotting factor IIa (thrombin), that the low molecular weight drugs do not possess.
 

SNT Gatchaman

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New Zealand
wouldn't Dr Vance Spence's (MEResearchUK) two papers that discussed the 'severe' endothelium damage his team identified in ME be a relevant part of this discussion? Are they in the PR archive, perhaps?

I found external links to two papers you may be referring to:

Acetylcholine mediated vasodilatation in the microcirculation of patients with chronic fatigue syndrome
and
Low-grade inflammation and arterial wave reflection in patients with chronic fatigue syndrome
 

GlassCannonLife

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GlassCannonLife

Yes, many times before, ACTH is never higher as <5 pg/ml cortisol 1.1. Yesterday ACTH again <5 pg/ml and cortisol 2.1.

Sorry is that cortisol in ug/dL? So normal range roughly 7-25? If yes then that is very low and it seems like you'd definitely benefit from glucocorticoid replacement.

Apologies though this is somewhat off topic to discuss in this thread!
 

SWAlexander

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2,130
Sorry is that cortisol in ug/dL? So normal range roughly 7-25? If yes then that is very low and it seems like you'd definitely benefit from glucocorticoid replacement.

Apologies though this is somewhat off topic to discuss in this thread!

Is it really a "off-topic to discuss"?
I mentioned cortisol several times before. Nobody seems to have been tested.
How many ME/CFS with low energy ever had a cortisol or VLCFA test?
And yes, cortisol normal range 8-25. Some say 10-25 is normal.
 
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SWAlexander

Senior Member
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2,130
Have you had morning fasted ACTH and cortisol tested?

Just looked it up and xarelto is rivaroxaban, a direct factor Xa inhibitor (inhibiting both free and bound factor Xa). It works similarly to (from wikipedia) "unfractionated heparin (UFH), low molecular weight heparin (LMWH), and fondaparinux, [which] also inhibit the activity of factor Xa, indirectly, by binding to circulating antithrombin (AT III)".

The anticoagulant I took, enoxaparin, also inhibits this clotting factor so it seems to be the main method of treatment for clotting aside from vitamin K antagonism (not an expert by any means have just looked up a few of these drugs recently).

Heparin is apparently referred to as UFH when it has not been separated into the low molecular weight fraction. UFH also purportedly has slight activity against clotting factor IIa (thrombin), that the low molecular weight drugs do not possess.

Thank you.
 

Countrygirl

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UK
I have been reading through the question and answer thread on Dr Jaeger's FB group and thought you might like to read my notes.

H.E.L.P. Apheresis and ME

Q. How many ME patients have been treated?

A. One who was bedridden for 7 years who is now walking. (Dr Jaeger also mentioned another who required 14 treatments.) A further patient has just started treatment.

Q. Does it cure LC?

A. At the beginning, the first patients responded quickly and it appeared to be a cure; however, now 200 have been treated and the cure rate is 20%, with the majority finding it an effective therapy. It cures POTS, screen sensitivity, PEM, air hunger etc. It reduces inflammation massively.

There seem to be two issues in LC: micro clotting/inflammation/fibrin, and viral persistence. H.A tackles both, but only in the blood. It improves blood flow by 20% and rejuvenates organs, including the heart. It results in the healing of damaged organs.

For some patients a co-treatment is necessary to reduce viral persistence. This has just been started. Ivermectin high-dosed long-term, Autophagy, Clofoctol and MABs are currently showing results. The earlier it is treated, the better, as after several months, it becomes chronic. Fibrin becomes very hard with time and less responsive to treatment.

Q. I feel much worse after stress. Why?

A. Patients become strongly symptomatic after stress. It is caused by the micro-clots.

Micro clots are in ALL LC patients so it is not necessary for any test to show them prior to HA. It requires a confocal fluorescent microscope, which only a few researches or unis have, to detect micro-clots. There is no available test. Scientists are working on that.

Vaccine injured require H.A. as the vaccines are causing micro-clots. So far 7 Vax-LCs have been treated, it shows that generally they react even better/faster than classic LCs.

Yes, there were full recoveries, some are still in treatment, so too early to say for all who have been treated.

High levels of alpha 2 antiplasmin could be a key in the micro-clotting diagnostic? Prof Pretorius will publish on this soon.

Patient with LC improved on Valtrex.

Has anybody researched the possibility of downregulating the levels of alpha2-antiplasmin, since this seems to hold a key role in the dysfunction of fibrinolysis? (No answer)

Q. Why are the treatments spaced out?

A. Because on a sick person the treatment can take quite a toll (relapsing etc) and the regeneration needs time. Some relapse with each treatment, but the relapses are temporary. Some can only tolerate one treatment a week.

Q. Is there treatment required prior to HA?

A. Yes, blood thinners under supervision of a GP/PCP are recommended. Have a look at protocol 2.1 in the file section. People have started Help with and without prior protocols. Protocols seem to speed up regeneration massively

NB. It is not a miracle cure. It appeared to be from early results, but after 200 patients, about 20% make massive improvements. After 18 months- two years the disease becomes chronic and takes many more cycles to improve. Also, treatment with blood thinners prior to treatment makes a 'massive' difference to the success of the Apheresis. It is not sufficient alone and requires careful pacing, diet, and, sometimes, removal of autoantibodies.

Q. How variable are the responses?

A. It varies widely; if not to say extreme. Some walk out of the clinic after one treatment and 4 weeks later are at 100%. Others needed up to 14 treatments and/or many months. It obviously depends on several factors: degree of micro-clots, fibrinogen on the endothelium, inflammation cascade, viral persistence and sometimes autoantibodies

Q. What symptoms does it cure or improve?

A. POTS, Dysautonomia, Orthostatic Intolerance, PEM, light sensitivity, air-hunger etc. We can only repeat: It is not about symptoms, it is all about removing the root cause, microclots + fibrin, viral persistence, inflammation cascade and, in rare cases, autoantibodies

Question about lack of published paper:

See media reports: https://apheresisassociation.org/media

A.It was not published as it is an opinion paper - patients were healed but there was no time to collect data prior and after treatment as the focus was solely to save patients' lives. And as the medical journal world has rules/standards and does not care about patients/lives saved, it was not published during corona times. Now this move cost thousands of lives and quite frankly we are beyond disgusted about this but there is nothing that can be done about this elitist arrogance. Several patients and organisations wrote to the journals, all letters and emails were ignored

 

andyguitar

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South east England
There is that magic number again. Something about seeing 20% recovery rates makes me think either 1/5 of people have something else or there are really 5 conditions under the ME banner and if we could just work out the 5 treatments we could all be on our way!

These are disappointing results.
I think the 20% figure refers to Long Covid not ME. One thing I'd like to point out is that covid is known to cause organ damage, me/cfs isnt. So I'm not suprised that the success rate is not 100%.
 

bensmith

Senior Member
Messages
1,547
Yes that is troubling news : (. I guess the vets on here are used to this, but i find this devastating.

Its weird they only claim 20 percent but then say it cures pem? If we were cured of pem…sounds nearly like a cure to me. Hm.

This sucks because it would be so horrible for me to get to treatment, even at a local hospital. Hopeful the roi would be worth it.

Thanks for posting.
 
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5vforest

Senior Member
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273
I think the best hope here is that they have some promising findings that can point to the actual etiology of ME / long COVID, even if their apheresis protocol isn't the correct treatment.
 

Martin aka paused||M.E.

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2,291
Guys, the 20% is the rate of CURED patients. And the cure of P.E.M. etc. refers to them. The rest make massive improvements. 10% do not respond. That’s quite an effective treatment… I haven’t heard of sth like this before …

Furthermore, there is a team of docs who want to save us. They want us to get better. I personally know one of the researchers and he works 7 days a week on this. Pretorius has done some serious research on Fibrinogen, von Willebrand Factor (VWF), SAA4, and plasminogen and α2AP —> blood clotting
See here:

https://www.medrxiv.org/content/10.1101/2021.05.21.21257578v2.full-text

I really dislike the tone of some members of this board towards researchers. If you bully them down, then solve this disease! Make it better!

I have an appointment at Dr. Jaeger's clinic on Friday and get an apharesis. I will report back.
 

bensmith

Senior Member
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1,547
I totally forgot you were in germany martin. Very excited for you.

Its not that i wouldn’t take it, its that i will have to fly yo germany with imperfect odds. Thats scary.

I’m not bullying researchers anyhow. I don’t think ive ever said a critical word toward any of them. This is a patient board.
 

SWAlexander

Senior Member
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2,130
That's very kind, thank you! I will report back (hopefully)
"I will report back (hopefully)" Don´t worry, you are in good hands. It takes a lot for me to believe in doctors, but Dr. Jaeger has my full confidence.
It will not be a overnight miracle, you know, since you are down for along time.
Let's get these clogged up pipes cleaned out, so we can let the clean blood flow and build muscles again.
 
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