Research update from Prof. Ron Davis (video!)

Gemini

Gemini

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gregh286 said:
His first work was submitted mid-80s on cell deformality....over 30 years...Doesnt really explain how symptoms can wax and wane quite dramatically. So one day rbc are worse shaped than others, or stiffer etc.?
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@gregh286, waxing and waning is an interesting question Simpson may have shed light on....

He described a "self-experiment" longitudinally testing his own red blood cell shape changes during two common infections and observed increased followed by return to normal shape changes over a 14-day period.

Question: Could red blood cell shape changes be modulated by infections or re-activations thereof?

His experiment is described in a 9-page paper in the 1992 book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, p. 597-605 available for free download by Nightingale Foundation https://www.nightingale.ca/publications

The book is also for sale by them and amazon.com, a great resource for anyone new to the field. Perhaps @Cort can point the San Jose State researchers to it if they've not yet seen it?

@Janet Dafoe (Rose49) Am delighted Ron and team are doing this "Weird Blood Project"! Two decades ago I met with Simpson about his work on one of his trips from New Zealand to the U.S.
 
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R

RWP (Rest without Peace)

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Learner1 said:
I have thick blood and get plenty of heparin which is not fixing it completely. My doctor is suggesting lumbrokinase, bingo, and Vitamin E.

Very interested in weird blood, though, hope they get some insight!
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@Learner1

Did you mean ginkgo instead of bingo? Maybe it's something I haven't heard of.

Sorry to hear that you still need more help with coagulation beyond your current meds. Those are a great start. As I posted elsewhere, my wife @PWR (Peace without Rest) eventually switched to a digestive enzyme/probiotic combination that she takes both with meals and between meals. In case you didn't see that, it's Enzymedica Digest Gold Plus Probiotics. It's one of their most extensive digestive enzymes spectrums, and the synergistic combination works better than either alone.

RWP + PWR
 
Janet Dafoe

Janet Dafoe

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867
Gemini said:
@gregh286, waxing and waning is an interesting question Simpson may have shed light on....

He described a "self-experiment" longitudinally testing his own red blood cell shape changes during two common infections and observed increased followed by return to normal shape changes over a 14-day period.

Question: Could red blood cell shape changes be modulated by infections or re-activations thereof?

His experiment is described in a 9-page paper in the 1992 book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, p. 597-605 available for free download by Nightingale Foundation https://www.nightingale.ca/publications

The book is also for sale by them and amazon.com, a great resource for anyone new to the field. Perhaps @Cort can point the San Jose State researchers to it if they've not yet seen it?

@Janet Dafoe (Rose49) Am delighted Ron and team are doing this "Weird Blood Project"! Two decades ago I met with Simpson about his work on one of his trips from New Zealand to the U.S.
Click to expand...
Thank you. I sent this to Ron. I'm pretty sure he will be interested!
 
R

raghav

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@Learner1 Well I dont know much about anti coagulants but have you tried the ayurvedic herb arjuna terminalia ? It is a blood thinner and also helps in strengthening the heart.
 
Learner1

Learner1

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Thank you for the suggestion. I'll discuss with my doctors. Seems like it is a powerful drug and can induce hypothyroidism and hepatoxicity and lower cholesterol, none of which I need, so it needs to be looked at in the context of everything else.

I currently take lumbrokinase for hypercoagulation, and get heparin regularly with my IVs.


Mel9 said:
Is 'weird' blood anything to do with high MCV?
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High MCV can indicate folate or B12 deficiency.
 
C

CatNap

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Learner1 said:
Thank you for the suggestion. I'll discuss with my doctors. Seems like it is a powerful drug and can induce hypothyroidism and hepatoxicity and lower cholesterol, none of which I need, so it needs to be looked at in the context of everything else.

I currently take lumbrokinase for hypercoagulation, and get heparin regularly with my IVs.



High MCV can indicate folate or B12 deficiency.
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I usually have high MCV, but my GP insists it's just an oddity I have.
 
Learner1

Learner1

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Your GP is ignorant on this matter. Right off the Medscape site:
The common causes of macrocytic anemia (increased MCV) are as follows: [3]

  • Folate deficiency anemia
  • Vitamin B12 deficiency anemia
  • Liver disease
  • Hemolytic anemias
  • Hypothyroidism
  • Excessive alcohol intake
  • Aplastic anemia
  • Myelodysplastic syndrome
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B12 deficiency was one of the findings of the Naviaux study. To follow up, you'll want a methylmalonic acid test and RBC folate or FIGLU, and not serum folate and B12.

For hypothyroidism, you'll want a full thyroid panel, including FT3, rT3, and antibodies, not just TSH and T4.

And if those don't show anything, do have the others checked out if your MCV remains very high.
 
W

Wishful

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Alberta
If blood cell size or stiffness was a significant factor, shouldn't patients with the thalassemia trait (small blood cells) be different? I have that trait. Maybe my ME would be far worse if I didn't have smaller blood cells?
 
AlwaysTired

AlwaysTired

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Messages
174
Re: pathogens not being involved, he mentions that the patients studied for this were/are severely ill, which seems to be in line with research that identifies differing causal or casual factors in different severity groups. Pathogenic cause seems to be prevalent in milder or moderate cases, and is linked to higher rates of recovery than other causes or triggers.

In my case I had stomach flu (type symptoms), likely from at least one enterovirus, the week before my mono/CFS started. I also tested positive for HHV-6, CMV, EBV, and mononucleosis (HHV-7 and coxsakie haven't been tested for yet). I happen to also fall into the moderate category of this illness.

I don't have hypercoagulation, and the color of my blood is the same as a non-CFS person's

I hope as research continues, differences between mild, moderate, and severe patients will be considered, and causal factors ruled out for one group won't be ruled out for another.
 
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