Martin aka Paused and H.E.L.P treatment

[SNT Gatchaman]

I saw this too on twitter. Crazy stuff. I wonder if they had to do anything special with the MRI to see the microclots like dyes or mri settings or 7Tesla mri? Lots of ME/CFS patients have had MRIs for various reasons, this wouldn't have been missed in ME/CFS (if it occurs) unless it requires a different setup.

That looks like a standard 3T MRI brain with SWI sequence (susceptibility weighted imaging). It exaggerates artefact from haemosiderin, which is a blood break-down product. As you say, this is not something that would be missed in ME patients - it's far too obvious.

I don't speak Swedish, but the video this came from looks to be describing the result of COVID infection that wasn't severe enough to demonstrate lung changes on CT, but could show impaired gas transfer from lung to blood in discrete regions of the lungs. The remainder of the brain imaging shows significant abnormalities on other sequences also.

This isn't a mild COVID case. I'm presuming this is a result of "moderate+" COVID (even if clinically mild) and I would have thought these findings are unlikely to be seen in many such cases. I don't think microbleeds (which I'm assuming this pattern represents) are responsible for the vast majority of brain fog symptoms in LC. Also to me the time course to LC symptoms mimics typical ME onset and these marked imaging changes would be more likely present from the outset.

ETA: You can imagine a problem with the clinical stratification in COVID, when thinking of it as a pulmonary disease, not vascular. If lung impairment is sub-clinical, the patient might be thought "mild". Neuropsychiatric changes might be ignored as "pandemic anxiety" etc. Plenty of stories on Twitter of healthy people being discharged "well" and then going on to fatal or otherwise extreme post-covid psychosis.

 

[SWAlexander]

I saw this too on twitter. Crazy stuff. I wonder if they had to do anything special with the MRI to see the microclots like dyes or mri settings or 7Tesla mri? Lots of ME/CFS patients have had MRIs for various reasons, this wouldn't have been missed in ME/CFS (if it occurs) unless it requires a different setup.

If you have had MRI with contrast all the way to the corpus callosum (CC) and brain stem, they would have to see it. But there is something else possible – maybe they didn’t look for, or didn´t told you.
I had a very good, but very direct, neuro surgeon who told me that he is very concerned about the white matter in my lower brain - CC subregions.

 

[YippeeKi YOW !!]

@Push Fwd .....
it's good to see you, however indirectly !!!!

Your post did remind me of what Asad (was it him.?) said about it - where triggering PEM/a crash "re-initiates" a lot of the cascade of problems and perpetuates the illness.

That might have been Prof Ron Davis in a recent talk.

My hypothesis differs from either of the those mentioned here, as far as I know, in that there are no contributory factors needed, no PEM crashes, no dramatic or sudden responses to either endogenous or exogenous stimuli .... the gradual, subtle shifting from one state to another just happens, and not in a linear way .... you can move backward into more moderate, or forward into mor severe, and there's ust no flucking explanation or warning. Sometimes when it's happened to me, I'm unaware of the shift until it becomes obvious that somethig has changed, which is usually well into the new cycle, because I'm, you know, slowwww ....

As long as there are new pieces discovered to work with, that's still a big win.

I totally agree. This is like putting together an intricate quilt, with no pattern, no guide, no knowledge of what materials will be either required or even available as you free-ass your way thru the design. Just really frustrating ....

Maybe it was the filtering of cytokines that caused that patients improvements.

I agree, filtering cytokines would perforce reduce inflammatory responses ... but this tricky little bustard has made sure that that's not the entire explanation, or at least it doesnt seem to be .....

I had a very good, but very direct, neuro surgeon who told me that he is very concerned about the white matter in my lower brain - CC subregions.

Frustratingly unhelpful, at least in practical terms, and just leaves you with one more thing to keep you staring at the ceiling at night ...

Did he plan to bring anything to that fight?

 

[SWAlexander]

Did he plan to bring anything to that fight?

Besides the white matter, he told me I have a Chiari Malformation that needed surgery.

 

[YippeeKi YOW !!]

Besides the white matter, he told me I have a Chiari Malformation that needed surgery.

Wow/ He's a whole carnival of fun .... are you going to do the surgery, or try for a second opinion, hopefully your own????

 

[YippeeKi YOW !!]

@Push Fwd ....
Give @Martin aka paused||M.E. a hug from all of us here, cheering his courage along on the sidelines, in various states of deshabiller and prone/supine-ness .... and one for you, too ....

 

[YippeeKi YOW !!]

@Martin aka paused||M.E.
What's the next step?

I seem to have missed it in the postings, mostly because everything seems to be written in a foreign language today ....

 

[Marylib]

You can see what she is looking at with this paper. The vaccine injured are looking at this too - some are having trouble with clots and very high d-dimer levels.
https://www.mdpi.com/2077-0383/10/22/5381/htm
https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC8400504/

 

[Gingergrrl]

I find this theory fascinating (as well as @Gingergrrl comment of autoantibodies) as I’ve been told I have thick blood and unusual sized platelets.

@Strawberry How was it determined that you had "thick blood and unusual sized platelets"? I apologize if you explained this and I missed it.

I suspect that the benefits of apheresis might be serving different purposes in different subgroups (meaning for some the heparin is beneficial for dissolving micro-clots but in others it is removing pathogenic cytokines or autoantibodies... or even something else)?

Do you have antiphospholipid autoantibodies causing the thicker blood?

I was curious about this, too. Someone asked me this in another thread (but now I am not sure who asked me or which thread it was )!

In my case, I tested positive for anti-Cardiolipin antibodies (at a very low/indeterminate level). I spoke to my doctor about it and in Dec/Jan, I am going to re-test for anti-Cardiolipin Abs plus run the entire Antiphospholipid Syndrome Panel. He does not think that I have APS but we want to rule this all out definitively.

 

[ChookityPop]

@Strawberry How was it determined that you had "thick blood

I was curious about this, too. Someone asked me this in another thread (but now I am not sure who asked me or which thread it was )!

In my case, I tested positive for anti-Cardiolipin antibodies (at a very low/indeterminate level). I spoke to my doctor about it and in Dec/Jan, I am going to re-test for anti-Cardiolipin Abs plus run the entire Antiphospholipid Syndrome Panel. He does not think that I have APS but we want to rule this all out definitively.

It might have been me actually. Its apparently very common to find cardiolipin abs in ME patients. Anti-cardiolipin antibodies were found in 95% of ME/CFS patients, https://pubmed.ncbi.nlm.nih.gov/19623655/

I tested positive for cardiolipin, Glycoprotein I and Also have complement activation. I want to test more relevant stuff though and will do it soon.

«An accurate diagnosis of antiphospholipid syndrome (APS) is important because blood clots can have serious consequences. Diagnosis of APS is based on the results of specific blood test results, with at least a 12-week gap between them». APS diagnosis


These are a little interesting:

Chronic fatigue syndrome and/or fibromyalgia as a variation of antiphospholipid antibody syndrome: an explanatory model and approach to laboratory diagnosis
https://pubmed.ncbi.nlm.nih.gov/10695770/

«An explanatory model of coagulation activation has been demonstrated through use of the ISAC panel of five tests, including, Fibrinogen, Prothrombin Fragment 1+2, Thrombin/ AntiThrombin Complexes, Soluble Fibrin Monomer, and Platelet Activation by flow cytometry»


Activation of the coagulation system in Gulf War Illness: a potential pathophysiologic link with chronic fatigue syndrome. A laboratory approach to diagnosis
https://pubmed.ncbi.nlm.nih.gov/11085289/

Edit: If you have are positive for APS autoantibodies and not the clinical criterea its called apla positive. Antiphospholipid autoantibody positive

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E.
What's the next step?

I seem to have missed it in the postings, mostly because everything seems to be written in a foreign language today ....

The next step is waiting for Dr Jaeger to call me to see what the next steps could be.

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. - I just saw this thread today - I'm so happy for you and very grateful for everyone with ME/CFS that you're able and willing to give this a try and sharing your experience in such detail!


It very well might be that filtering out the cytokines was responsible for that patient's improvement - I think this could be a very important finding, if someone can sort out whether filtering the cytokines made such a difference for the ME patient.

And also I'm very glad to hear that the apheresis didn't cause you any harm! You say you were understandably very tired, but not wrecked, after your day - Would a 12-hour day ordinarily have "wrecked" you? I would have crashed after a 12-hour day (I'd crash after a 5 or 6 hour day!) So did you feel better than you should have the next day, or just the same as usual?

I felt just the same

 

[Martin aka paused||M.E.]

Atm, my depression got unbearable. It's paralyzing. I will come to more questions when I'm better.

 

[GlassCannonLife]

Atm, my depression got unbearable. It's paralyzing. I will come to more questions when I'm better.

Sorry to hear that man, all the best!

 

[SWAlexander]

Wow/ He's a whole carnival of fun .... are you going to do the surgery, or try for a second opinion, hopefully your own????

I had the surgery already. Was no fun. Nothing has changed.

 

[SWAlexander]

Sorry, that cut Dr. Mark in two halves. Dr. Mark please forgive me.

 

[SWAlexander]

The Psychologisation of Illness | Why Long Covid (and ME/CFS) Are Not 'Just Anxiety'

 

[Consul]

Atm, my depression got unbearable. It's paralyzing. I will come to more questions when I'm better.

Maybe anti depressant medication molecules are washed away from the blood when you do this treatment. Pure speculation though.

 

[YippeeKi YOW !!]

Atm, my depression got unbearable. It's paralyzing. I will come to more questions when I'm better.

Oh sweetie, I know how devastating that is, especially after everything you just went thru on top of everything you've gone thru for so long now.

No matter how relatively easy the HELP stuff was, it was still a huge drain on limited reserves ...

Try to remember that this is just temporary, tho that's not much consolation when you're in the belly of the beast ... and that we're all pulling for you behind the scenes ....

 

[YippeeKi YOW !!]

I had the surgery already. Was no fun. Nothing has changed.

Yeah, the specialty of most of our medical system .... intrusive, expensive, no change, "Next please ...." ....

I'm sorry that you went thru all that with no visible relief or improvement ...

EDIT .... for OCD-prompted 'better word' ....