Accidentally better on bouts with anti-coagulant

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(I posted this in a FB group yesterday, so some may have seen this there)

I was thinking today about something. I have to give a little back history first.

Over the last 20 years I have had lots of bouts of low blood sugar. I am not diabetic. So about 10 years ago I was in the hospital for a 72-hour fast to see how low it goes and at the same time watch the endogenous insulin levels made. They were testing to see if I had an insulinoma. I passed the test and got sent home. Going home I told my husband my mind was soooo clear and had mental energy, not that old foggy cloud, so I figured lack of food was the reason, kind of like being keto. Or, because of receiving IV fluids helping my POTS. It lasted a few days more at home, then went away.

Over the next 6 years, I had two more fasting tests and one surgery for a hip replacement. What was odd was I did not get the clear head after those next two fasts, even with IV fluids, too. But, after my hip replacement I DID have that clear head and my brain was immersed in memories from 20 years earlier while I was at home(like when raising my kids). It lasted about a week, then back to the fog. I felt like the old me, before becoming chronically ill, with the clear thinking and having FEELINGS. I have become a person with a monotone-mood, neither happy nor sad.

What I discovered was the link between those two hospital stays was I received blood thinners those times. The other two times I did not.

Sorry for the long post, but wanted to explain it. Would anyone know of a connection with blood thinners waking the brain up? BTW, I was tested for Anti-Phospholipid Syndrome with Dr. Schofield, because I was thinking AHA!, I might have the answer, and I was negative for that particular issue.

I have tried taking aspirin at home, but I do not get that fog-clearing benefit from it. Any other theories for what I can have checked or addressed by a physician?
 

Rufous McKinney

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Sorry for the long post, but wanted to explain it. Would anyone know of a connection with blood thinners waking the brain up? BTW, I was tested for Anti-Phospholipid Syndrome with Dr. Schofield, because I was thinking AHA!, I might have the answer, and I was negative for that particular issue.

Given that our blood can be considered stagnent (my chinese herbalist uses this term) and given that it often feels like the vascular system is not flowing properly- I've always wondered if something blood thinning might help us.
 

Rufous McKinney

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If our red blood cells are not deforming properly, then at the capillary level, there must be deprivations of some sort.

What causes our air hungar symptom?
 

Pyrrhus

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For what it's worth, many other people have reported temporary improvement with things that improve blood circulation. Vasodilators and blood thinners are two such things that improve blood circulation, especially in those small-diameter capillaries that are easily clogged.

The reason for these temporary improvements may be as simple as the fact that they open up those small-diameter capillaries, providing nutrients to somewhat starved tissues, and removing waste products from those same tissues. (There may be other reasons, too.)

In the brain, the diameter of arteries roughly correspond to the size of the tissue being served. Arteries that serve a large volume of the brain have correspondingly wider diameters. The most susceptible blood vessels in the brain are called the lenticulo-striate arteries. Since the lenticulo-striate arteries serve a small volume of the brain, they have a very narrow diameter. Unfortunately, that small volume of the brain contains the basal ganglia, which controls a huge amount of motivation and attention processing. (and the basal ganglia has been repeatedly implicated in ME) So any vasodilator or blood thinner that opens up the lenticulo-striate arteries should improve the functioning of the basal ganglia.

Hope this helps.
 

wigglethemouse

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What I discovered was the link between those two hospital stays was I received blood thinners those times.
I was tested for Anti-Phospholipid Syndrome with Dr. Schofield, because I was thinking AHA!,
I've watched a few videos from Dr. Schofield and she seemed knowledgeable about coagulation issues and chronic disease. What did she have to say? I'm assuming all of the coagulation tests came back normal?
 

sb4

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For what it's worth, many other people have reported temporary improvement with things that improve blood circulation.
You say temporary improvement, as in it stops working after a while? Also which drugs/things? I remember one lady improving massively on I think Cinnarizine, I also think this was long term.
 

Pyrrhus

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You say temporary improvement, as in it stops working after a while? Also which drugs/things? I remember one lady improving massively on I think Cinnarizine, I also think this was long term.

The anecdotes I have heard reported temporary improvement. If someone has experienced a more lasting improvement, that's great!
 
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I've watched a few videos from Dr. Schofield and she seemed knowledgeable about coagulation issues and chronic disease. What did she have to say? I'm assuming all of the coagulation tests came back normal?

If I remember correctly, all the tests were normal. Definitely negative for APS. She just wanted me to try the mast cell route, where you take different meds for it. I'm not sure I have it, so I didn't delve any further on that.
 

JES

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The idea about anticoagulants helping goes back to the findings of Dr. Berg in the 90's (MEpedia article).

You may want to try certain natural compounds and see if you get similar effects. Supplements with proteolytic enzymes include for example bromelain, nattokinase and serrapeptase. They may not be quite as powerful as IV blood thinners, but the effect I had was very interesting.

At first I noticed a big improvement in clarity and cognitive thinking already half a day after my first dosage of bromelain. I could also feel somehow an improvement in blood flow to my extremities, which was a very weird feeling. Unfortunately the improvements only lasted for a couple of days after which I felt sicker than usual, so at least in my case it seems whatever mechanism that is causing hypercoagulation is probably protective and simply trying to address coagulation won't likely solve the root cause.
 

Sushi

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The idea about anticoagulants helping goes back to the findings of Dr. Berg in the 90's (MEpedia article
I was tested with Dr. Berg’s test in the late 90s, and yes, I too had coagulation problems and found benefit from 7months of low molecular weight heparin injections.
I have tried taking aspirin at home, but I do not get that fog-clearing benefit from it. Any other theories for what I can have checked or addressed by a physician?
There are two types of what is commonly called a blood thinner: anti-platelets, and anticoagulants. Aspirin is an antiplatelet, and Xarelto is an anticoagulant. That might explain the difference. I now take an anticoagulant for other reasons.
I do not remember the names, but the first was a daily injection, and the second was a pill, maybe Xarelto? (just guessing, as I looked at a list and that looked familiar)
From your description, the injection was probably a type of heparin—an anticoagulant.
 
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The idea about anticoagulants helping goes back to the findings of Dr. Berg in the 90's (MEpedia article).

Interesting. So do ME doctors test for a lot of possible infections? I could believe that I have an infection even though there are no outward signs, as I FEEL that malaise you get when ill. I've told many of my doctors that I don't have just fatigue, I have malaise.
 

Rufous McKinney

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At first I noticed a big improvement in clarity and cognitive thinking already half a day after my first dosage of bromelain. I could also feel somehow an improvement in blood flow to my extremities, which was a very weird feeling. Unfortunately the improvements only lasted for a couple of days after which I felt sicker than usual, so at least in my case it seems whatever mechanism that is causing hypercoagulation is probably protective and simply trying to address coagulation won't likely solve the root cause.

I've dabbled in serrapeptase a bit. For me, there is also a detox effect after I take one. So I take it very slowly, just take one every few days....,

Mostly- I often feel I detox really intensely so I stop- whatever it is I'm doing so I do not seem to get to the other side- oh, now thats better and I also feel better.

If I do anything very intensely, I'll get PEM and detox effects. Massaging my own muscles with a vibrator- something comes out, sicker again. Massage, acupuncture, lymph treatments.
 
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I was tested with Dr. Berg’s test in the late 90s, and yes, I too had coagulation problems and found benefit from 7months of low molecular weight heparin injections.

There are two types of what is commonly called a blood thinner: anti-platelets, and anticoagulants. Aspirin is an antiplatelet, and Xarelto is an anticoagulant. That might explain the difference. I now take an anticoagulant for other reasons.

Did you have an infection that they found? Also, thanks for the describing the difference between aspirin and Xarelto, as that narrows down the "why" one works and one doesn't. So many clues.
 

Rufous McKinney

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I could believe that I have an infection even though there are no outward signs, as I FEEL that malaise you get when ill. I've told many of my doctors that I don't have just fatigue, I have malaise.

Our bodies are likely producing substances that make us feel ill, like LPS from E. Coli- leaky gut issues- this enters our bloodstream after we exercise and it makes you feel poisoned. It might not be directly from the viruses who got us somehow.
 

Sushi

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Did you have an infection that they found? Also, thanks for the describing the difference between aspirin and Xarelto, as that narrows down the "why" one works and one doesn't. So many clues.
They found lots of past infections but none that were currently active. Dr. Berg’s theory, as I remember it, referred to past infections.
 
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