Is me/cfs a blood disorder?

SWAlexander

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Thats great! Im pretty sure I benefit from blood thinners as well Which meds and dosing are you doing? And what antibodies did you test positive for?

I tested positive for P-Kardiolipin IgG: 35 (< 10) and P-Beta2-Glykoprotein I IgG: 30 (< 10)
Yes, my IgG was very high. However, Antiphospholipid-Syndrome is another test.
Example one:
indicator yellow borderline.
red too high.

1650967715967.jpeg
 

SWAlexander

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Again, it is the blood, autoantibodies and inflammation play a vital role.

Google translation:
reCOVer: a new active ingredient in focus against long-COVID

Individual healing attempts have shown success in the treatment of long-COVID with an active ingredient from heart medicine. As part of a joint project, researchers are now getting to the bottom of the molecular mechanisms of this therapeutic approach.

https://www-gesundheitsforschung--b..._sl=de&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp
 

ChookityPop

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Again, it is the blood, autoantibodies and inflammation play a vital role.

Google translation:
reCOVer: a new active ingredient in focus against long-COVID

Individual healing attempts have shown success in the treatment of long-COVID with an active ingredient from heart medicine. As part of a joint project, researchers are now getting to the bottom of the molecular mechanisms of this therapeutic approach.

https://www-gesundheitsforschung--b..._sl=de&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp
I remember after relapsing in 2019 I had massive eye issues with strain, blurry vision and some pressure feeling. I went and did an ordinary eye exam with an optician and I remember he asked me if I had high blood pressure which I have never had. I think its most likely related to all of this.
 
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I remember after relapsing in 2019 I had massive eye issues with strain, blurry vision and some pressure feeling.
It feels like tons of pressure...both the eyes and then the brain behind the eyes.

Sometimes I have trouble with whether my higher BP is affecting the eyes or not.

Recently, I had a long spell of low blood pressure, and the eye thing was not very different.
 

kangaSue

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Can someone just cure this hell?
I wonder if really going through the protocols for micro clots and vascular issues, might actually lead to eventual improvement.

While I say I'm taking this and that, trying this and that, I never REALLY launched the trial Aguirre-Chang posted here in PR.

I still haven't been able to take the copaiba internally, and therefore I am not achieving even TRYING to get these things to happen.

Its just so hard every day and on and on and on.......
 

kangaSue

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Oliver3

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I never noticed any such effect. Has anyone found anti-inflammatories to be a reliable treatment for PEM?
Yes..black seed oil.
It's the thymoquinone. I saw a french team somehow affiliated to the omf were considering thymoquinone.
It's not that bioavailable in black seed oil.
I stopped taking it because of the omega ratios potentially leading to clogging up the arteries.
But it never stopped working. Just the thymoquinone on its own would be great.
It stopped my POTS and pem in its tracks every time I took a sip
 

Wishful

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Yes..black seed oil.
It's interesting that two unrelated seeds both called "cumin" have been effective PEM treatments. I hadn't tried it before, and there's no point now since I no longer have PEM.

Whether thymoquinone worked for you because it's an anti-inflammatory is hard to prove. Thymoquinone "indiscriminantly binds to proteins", so it could have all sorts of effects in the body. There are probably tens of thousands of plants that can claim to have "anti-inflammatory effects", but just how effective they are at that is probably unknown, and may be based on poor research (all too common).

I suppose there aren't any 'pure anti-inflammatories' that do nothing else in the body. However, if an herbal remedy claimed to be anti-inflammatory works, but other anti-inflammatories don't, then it's probably some other mechanism of the remedy providing the benefit.
 

Oliver3

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It's interesting that two unrelated seeds both called "cumin" have been effective PEM treatments. I hadn't tried it before, and there's no point now since I no longer have PEM.

Whether thymoquinone worked for you because it's an anti-inflammatory is hard to prove. Thymoquinone "indiscriminantly binds to proteins", so it could have all sorts of effects in the body. There are probably tens of thousands of plants that can claim to have "anti-inflammatory effects", but just how effective they are at that is probably unknown, and may be based on poor research (all too common).

I suppose there aren't any 'pure anti-inflammatories' that do nothing else in the body. However, if an herbal remedy claimed to be anti-inflammatory works, but other anti-inflammatories don't, then it's probably some other mechanism of the remedy providing the benefit.
It was interesting that the omf were gonna look at thymoquinone
All I know is, every time I took it, the fight or flight stopped, the pots lessened or stopped, the orthastic intolerance stopped.
It had a very unfortunate side effect, that if rather keep to myself but the seed oil part with the wrong omega ratios is why I stopped.
There are loads of oils that I've tried to no avail.
I'm pretty sure its the thymoquinone. It was like and day.vseemed to improve blood flow too
 

Oliver3

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It's interesting that two unrelated seeds both called "cumin" have been effective PEM treatments. I hadn't tried it before, and there's no point now since I no longer have PEM.

Whether thymoquinone worked for you because it's an anti-inflammatory is hard to prove. Thymoquinone "indiscriminantly binds to proteins", so it could have all sorts of effects in the body. There are probably tens of thousands of plants that can claim to have "anti-inflammatory effects", but just how effective they are at that is probably unknown, and may be based on poor research (all too common).

I suppose there aren't any 'pure anti-inflammatories' that do nothing else in the body. However, if an herbal remedy claimed to be anti-inflammatory works, but other anti-inflammatories don't, then it's probably some other mechanism of the remedy providing the benefit.
But it's a fair point, we don't know what's doing the good work in these scenarios.
I honestly thought I was gonna recover after being severe..and for a few months I had a ninety percent holiday from anything but the lightest pem and mild fight or flight