Is Apheresis an effective treatment for Long Covid and ME?

[BrightCandle]

I must be a little over a month since I started my anticoagulants. I had trouble renewing the worm enzyme so ended up with nattokinase as a replacement so it's that and bromelain currently. My blood has thinned, now I bleed a lot more normally and I could maybe take a home blood test. In the primary measure I can see the supplements do obviously work on blood viscosity. They do what is stated in the paper in terms of blood flow.

I do feel improved, maybe 10% hummingbird, it's not dramatic but it's above my baseline. Today I noticed just how much more colour my skin has. I thought I was mostly pale with dark eyes due to lack of sunlight but my skin colour is clearly pinker and the dark circles under my eyes are reducing. You can literally see I am less ill and that is all blood seeming to appear on my skin again. I also haven't had the odd skin bumps between my fingers.

I can't be certain it's the anticoagulants. I am also taking mutant bcaa+, v3.2 hasd, lola and probiotic inventions. But just due to the obvious skin colour change and blood viscosity adjustments it seems most likely its the anticoagulants. I hope it continues. I shall update roughly in a month again, we all know we have this temporary positive results to certain drugs and it stops working or its not as effective so I wouldn't get too excited yet. It is nice to see they do appear to work on the blood in the way described and it took a good month to get from viscious to somewhat runny so I have a way to go yet. Whether it's a treatment or even a cure it's way too early. I need to be careful now as a serious injury could result in a significant bleed so its not without its risks, a shaving cut wouldn't close properly for 3 hours even with alum so it's definitely a lot more like it was before I got ill, if it gets even thinner and less clot capable then I could be in danger.

 

[Countrygirl]

Here is Dr Jaeger and Asad on the news.

Turn onthe sutitles and then from settings, chose English as you watch on Youtube.

 

[5vforest]

If it's important info, maybe someone will manage a transcription in English. (The only subtitles available are auto-translated and not really up to the task.)

 

[perrier]

Dr. Jaeger made the point that one must start with the blood thinners and if these do not solve the problem, then Apheresis will likely do the job. She also said that she could not take on the whole world, and Dr. Asad Khan made an intense plea that LC patients need attention now otherwise they may never get their health back.

Now to get to ME.

This evening about 5 hr ago, Dr. Khan was in an exchange with an ME patients who wanted to know where to get anticoagulants, and below is part of what Dr. Khan wrote:

"Hello- sorry! Priority has to be to identify underlying pathology which may not be clots- need more research on different ME viruses. Vital to demonstrate microclots before embarking on anticoagulation.
@PutrinoLab
may be able to signpost they do a great job with #LongCovid"
------------------

Where does this leave the ME patients? Years more of research--trying to determine which virus struck whom? Or is it a matter of trying to get one's blood evaluated? And where will this be done? It requires a fluorescent microscope, doesn't it? And where will this be done? And what about the sticky blood issue that a number of ME researchers noted?

@Countrygirl What does Dr. Weir think about all this? And have you any idea when we may know a bit more about the ME blood which Dr. Pretorius is going to be looking at. And did those 2 ME patients whom Dr. Jaeger treated have clots?--they must have.

And Dr. Davis (if I am not mistaken now has this sort of microscope)--so Stanford may report also: I don't know their plans.

 

[5vforest]

Dr. Asad Khan made an intense plea that LC patients need attention now otherwise they may never get their health back.

So, just to be totally clear: they believe that there is some kind of ticking clock, and the more time that passes, the less likely the patients will be to recover?

 

[perrier]

Dr. Khan says that these people must be attended to, or else there is a possibility they may never regain their health. (This was his meaning, but I am not quoting verbatim.)

If you watch the video towards the very end, he is speaking in English and you can catch his precise phrase.

I became cold as ice when I heard these words, from head to foot.

 

[dylemmaz]

Dr. Khan says that these people must be attended to, or else there is a possibility they may never regain their health. (This was his meaning, but I am not quoting verbatim.)

If you watch the video towards the very end, he is speaking in English and you can catch his precise phrase.

I became cold as ice when I heard these words, from head to foot.

dr davis has said this same thing before. he mentioned he feared long covid could be similar to PANS/PANDA, where if it isn’t treated within a year (steroids in the case of PANDA), it will become much more difficult to treat. he did concede, however, that there was no evidence to suggest such an idea is true. it was simply a fear of his. so it’s important to keep that in mind. it could simply be a fear of dr khans, that lacks any evidence

the thought does scare me, though

 

[SWAlexander]

that there was no evidence to suggest such an idea is true. it was simply a fear of his.

Maybe Dr. Kahn is referring to attacking the brain and generating neuro-psychiatric long therm symptoms such as white matter and brain fog.

From the video quick transl:
Dr. Jaeger: `…the virus that causes the disease, this virus breaks our non-stick coating in the veins that leads to reduced blood flow. Reduced blood flow causes 256 different symptoms from brain-stem encephalitis to intestinal paralysis. That scares people to death when they have attacks of suffocation at night. When these pitiable people turn to doctors who tell them they've got a psychological problems….`

 

[SNT Gatchaman]

Where does this leave the ME patients? Years more of research--trying to determine which virus struck whom? Or is it a matter of trying to get one's blood evaluated? And where will this be done? It requires a fluorescent microscope, doesn't it? And where will this be done? And what about the sticky blood issue that a number of ME researchers noted?

Here's how I'm looking at it until we have more published research - and these researchers seem to be going as fast as practicable.

LC behaves like ME and micro-clots have been shown in LC. The mechanism makes sense given what we know about severe acute COVID also - plenty of people were raising alarm about hypercoagulability there in 2020, sadly many ignored. Anecdotally, removing the clots (either directly or via medication, or both) significantly improves symptoms in most.

Not all ME will have this mechanism of micro-clots, but it might be very similar. Maybe something else that damages the blood vessel lining or otherwise impairs oxygen transfer. I don't think he means that each specific virus has a different mechanism or that you have to identify the virus first. Just that the pathology needs to be identified.

LC will show the biological mechanism that can lead to an ME picture. Treating that abnormality fixes the underlying problem and allows return of function (to greater or lesser degree).

There can't be too many mechanisms in ME (otherwise we should have found some by now) and the LC finding should incentivise researchers and their funders to find the others.

So, just to be totally clear: they believe that there is some kind of ticking clock, and the more time that passes, the less likely the patients will be to recover?

It's a call to action directed at the authorities. It's not known but it's certainly a possibility that damage is being accumulated, some of which may not reverse, even when the underlying problem is fixed. But remember, although rare, some long term ME patients have recovered spontaneously; and generally post-mortem studies or biopsies have not shown visible organ damage (not 100%, but mostly).

ETA: Secondary effects, e.g. breakdown of blood-brain barrier leading to neuroinflammation may take longer to improve and it's possible that some effects may be fixed. There's also the possibility that various ineffective treatments may cause irreversible effects.

 

[5vforest]

thanks @SNT Gatchaman , I always enjoy reading your perspective.

 

[junkcrap50]

Where does this leave the ME patients? Years more of research--trying to determine which virus struck whom? Or is it a matter of trying to get one's blood evaluated? And where will this be done? It requires a fluorescent microscope, doesn't it? And where will this be done? And what about the sticky blood issue that a number of ME researchers noted?

If it's the cause of ME/CFS, then probably less than 1 year of research. Dr. Pertorius will be ready to be collecting ME/CFS blood samples early next year.

I think it's a matter of getting one's blood evaluated. Not very easy, but not impossible. I'm pursuing it currently by trying to rent time from my local university on their fluorescent microscope. But I think if there's at least 1 study in ME/CFS that confirms this, then it's probably all you need before patients are trying it as treatment. And you'll have enough anecdotal evidence very quickly.

Also, long-term treatment of ME/CFS patients on anticoagulants & fibrinolytics may show some benefit and could give a clearer picture. I'm sure some patients will try it. There is a risk, but with careful follow with a doctor's supervision, worth trying I'd think. Dr. Holtorf does this already and has been for several years.

But Dr. Pertorius recently said in an interview I think that these microclots can be seen on regular light/optical microscope. And you do not need flourescent microscope. However, the fluorescent microscope would be more definitive, I imagine.

 

[SWAlexander]

Not all ME will have this mechanism of micro-clots, but it might be very similar.

Please consider that other viruses and bacterial could lead to clotting.
After sepsis, 2016, my blood was very thick. The PICC line was constantly blocked, and I could not lift my arms and barely could walk. Sonogram revealed blood clots in left arm and 7 clots in the left leg.
What was done about it? – Nothing. No blood thinners, no fallow up.

 

[godlovesatrier]

I've been taking nattokinase for about 2 months maybe 3. It seems to help a tiny bit but that's it. However I'm sure natto is the weakest anti coagulant out of the serraptase heparin lumbronkinase list.

I think heparin and serraptase are the two strongest from memory. But I've never been able to find these two.

 

[SWAlexander]

I've been taking nattokinase for about 2 months maybe 3. It seems to help a tiny bit but that's it. However I'm sure natto is the weakest anti coagulant out of the serraptase heparin lumbronkinase list.

I think heparin and serraptase are the two strongest from memory. But I've never been able to find these two.

I`m taking persciption XARELTO® (rivaroxaban) since May. My blood is still thick. Sometimes, I never know when, I bruise easily.

 

[BrightCandle]

I've been taking nattokinase for about 2 months maybe 3. It seems to help a tiny bit but that's it. However I'm sure natto is the weakest anti coagulant out of the serraptase heparin lumbronkinase list.

I think heparin and serraptase are the two strongest from memory. But I've never been able to find these two.

Lumbronkinase is meant to be the strongest and what I started with but its a lot more expensive and its been hard to get hold of since the initial paper went out, anecdotally I suspect the shortage is at least partly based on a lot more people taking it. I consider the Bromelain more important, given the stated nature of these clots it is the one most likely to break down the components.

 

[Martin aka paused||M.E.]

And did those 2 ME patients whom Dr. Jaeger treated have clots?

Yes.
Weir said to me that he thinks it’s kind of an immune disease. But that does not exclude clots (Jaeger explained it in the video that these lead to damaged endothelial cells and inflammation.

If you watch the video towards the very end, he is speaking in English and you can catch his precise phrase.

Asad doesn't know that. There is no evidence for that. But it's a theory that I find reasonable if clotting causes inflammation and maybe AA over time.

that there was no evidence to suggest such an idea is true. it was simply a fear of his.

Exactly

Not all ME will have this mechanism of micro-clots, but it might be very similar.

Yep. I don't have fibrinogen clotting.

Just that the pathology needs to be identified.

Questionable. If there is a reservoir in the body and that causes clotting (don't ask me how) then you might have to kill the viruses first.

Dr. Pertorius will be ready to be collecting ME/CFS blood samples early next year.

She already has one.

But Dr. Pertorius recently said in an interview I think that these microclots can be seen on regular light/optical microscope

Yes. If it's blood clotting you can see that on a good regular light microscope (not too expensive...)

 

[godlovesatrier]

Lumbronkinase is very hard to get. Definitely the one Buhner recommends people take. Thanks for clarifying strength I haven't read about this stuff for awhile.

I saw prices upward of £100 in Google shopping. It's a shame because the Canadian company is supposed to be the only company that make it properly.

I've heard but not had info about this recently that in Canada it just costs a normal price. Maybe if we could find a Canadian friend to buy it for us they could then ship it to us. Assuming that's still true and supply is steady in Canada.

 

[godlovesatrier]

@Martin aka paused||M.E. the clots on the microscope - is that the same abnormality Joshua Leisk has seen? He says he's seen it in over 600 people now.

 

[Countrygirl]

Dr. Jaeger made the point that one must start with the blood thinners and if these do not solve the problem, then Apheresis will likely do the job. She also said that she could not take on the whole world, and Dr. Asad Khan made an intense plea that LC patients need attention now otherwise they may never get their health back.

Now to get to ME.

This evening about 5 hr ago, Dr. Khan was in an exchange with an ME patients who wanted to know where to get anticoagulants, and below is part of what Dr. Khan wrote:

"Hello- sorry! Priority has to be to identify underlying pathology which may not be clots- need more research on different ME viruses. Vital to demonstrate microclots before embarking on anticoagulation.
@PutrinoLab
may be able to signpost they do a great job with #LongCovid"
------------------

Where does this leave the ME patients? Years more of research--trying to determine which virus struck whom? Or is it a matter of trying to get one's blood evaluated? And where will this be done? It requires a fluorescent microscope, doesn't it? And where will this be done? And what about the sticky blood issue that a number of ME researchers noted?

@Countrygirl What does Dr. Weir think about all this? And have you any idea when we may know a bit more about the ME blood which Dr. Pretorius is going to be looking at. And did those 2 ME patients whom Dr. Jaeger treated have clots?--they must have.

And Dr. Davis (if I am not mistaken now has this sort of microscope)--so Stanford may report also: I don't know their plans.

Dr Weir has contacted Forward-ME to inform the government of his observations in Germany, hoping that the eight apheresis machines in the UK will be converted to HELP apheresis. I have heard that Cardiff seems to be interested but they are waiting for the published papers. However, the BPS cabal still have a very strong hold on the UK and the medical profession would not view apheresis treatment as appropriate for people with delusionary illness beliefs who are just deconditioned We still have a long way to go before ME is accepted as a serious multisystemic disease in the UK.

He did say to me that it is inevitable that Long Covid people will be first to be offered the treatment. However, I understand that anti-coagulants may be used initially. My concern is that once the disease is long-standing, that the micro clots, if present, would not be vulnerable to anti-coagulants. We will have some ME patients undergoing HELP apheresis soon so that will provide us with some information.

Yes, I understand that the two ME patients who were successfully treated did have clots. According to Asad , it is people whose ME started with glandular fever who are particularly (to quote him) VERY clotty.

As a matter of interest, I found a PhD thesis written by Dr Andrew Morris in 1957 a couple of days ago. which I read from beginning to end. He was a GP with a rural practice in the north of England and described an outbreak of what was clearly ME when 200 of his patients became ill. Unlike today, they were allowed to convalesce for as long as it took (like the Royal Free patients in 1955 who recovered if they were treated like polio patients and could rest until better, even if it took a year or two). However, one of the patients died during 1955 while ill with ME, and it was found that she had small clots throughout areas of her brain. Could this have been typical, I wonder?

What I am curious about is the autopsy results of Dr Eric Booth. He died of/with ME in 1995. His widow was instructed that on no account must the autopsy results become known and she was threatened into silence. This was at the time that Wessely and the PACE authors were seizing control of ME. Just what was it that was found in his autopsy that had to be kept secret? Did he too have clots? The other autopsies we know show inflammation of the dorsal root ganglion throughout the length of the spine and damage to the heart.

I gather Asad is not having any more apheresis and is now relying on anticoagulants.

I believe I am right in saying that a combination of aspirin and clopidogrel is given.

On a personal note, I was on aspirin following TIAs and a stroke when I had what was almost certainly Covid in January, but on day 12 I still had a TIA, followed by a second a few days later. I am now on Clopidogrel, but, nevertheless, had what was considered to be a brain stem TIA five weeks ago, so I am not overwhelmed by the effectiveness of these medications. Perhaps it is different when they are both taken together. Also, I wonder about the release of the contents of the micro-clots as they may cause an increase in symptoms. Hopefully, all will become clearer in the next few months.

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. the clots on the microscope - is that the same abnormality Joshua Leisk has seen? He says he's seen it in over 600 people now.

600??? But yes, it’s the same.