Research update from Prof. Ron Davis (video!)

[drob31]

I haven't watched the video yet but what did Dr. Davis say re: finding no pathogens? Did he mean by antibody testing or PCR?



Did he say if they tested the subjects for anti-phospholipid or "Hughes" Syndrome? My understanding was that this tests if you have thicker blood or more at risk of a blood clot. I had this testing done prior to starting IVIG (in early 2016) and was negative on all tests/auto-antibodies and my blood was not considered sticky (whatever this means)?



LOL

I had the "standard" test for this and it was negative. Although the cyrex autoimmune panel was a weak positive.

However it seems like some people have a ton of false positives with Cyrex.

 

[gregh286]

I had the "standard" test for this and it was negative. Although the cyrex autoimmune panel was a weak positive.

However it seems like some people have a ton of false positives with Cyrex.

Looking at symptoms its easily and highly conceivable that blood flow in capillaries is not efficient. Numb hands..cold feet....ashen faced...weak pulse...muscle weakness....its endless.
Lot of these symtoms are similar to very low taurine. Responsible for maintaining cell volume..membrane flexibility....electrolyte homestatis..
Quite a few people here get real thirsty in bad crashes myself included. Water in just gets dumped out almost instantly via urine.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2269780/

 

[drob31]

Looking at symptoms its easily and highly conceivable that blood flow in capillaries is not efficient. Numb hands..cold feet....ashen faced...weak pulse...muscle weakness....its endless.
Lot of these symtoms are similar to very low taurine. Responsible for maintaining cell volume..membrane flexibility....electrolyte homestatis..
Quite a few people here get real thirsty in bad crashes myself included. Water in just gets dumped out almost instantly via urine.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2269780/

Do you think supplemental taurine would help? At what dose though?

 

[aquariusgirl]

Pretty sure yasko found all her CFS patients had high taurine in urine amino acids.

Wasting taurine?

 

[RWP (Rest without Peace)]

@drob31, @aquariusgirl

Yes, supplemental taurine could help in many areas. Usually, a 500 mg. dose would be the place to start, though if someone is very sensitive, a partial amount of that could be used.

@aquariusgirl, if those values are correct (high taurine output), that makes sense. Over the 30 years of my wife's [@PWR (Peace without Rest)] illness, she has used taurine for detoxing after chemical exposures (due to MCS) and for sleep. Right now, she can tolerate large doses (5 grams or more per night), or maybe she's wasting so much, she's using it up too fast!

Unlike other sleep-inducing amino acids, taurine doesn't cause much the typical grogginess. It's also a key component of bile, and if my memory serves me, Dr. Naviaux found a deficiency of bile metabolites in the Severely Ill study.

P.S. I just added this: If using taurine for sleep, be aware that (in large doses) it will stimulate bile and urine flow, so use only what's necessary to avoid unintended bodily functions at bedtime.

@RWP + PWR

 

[charityfundraiser]

4. findings in blood flow. They're finding different characteristics in patient blood: it's "strange, a little sticky", "a little different in colour" (!!!) and flows differently through artificial capillaries. And they are developing technology to measure this.

[seriously if our blood is a different colour that's the easiest biomarker I ever heard of. A person with a pair of scissors and a few paint swatches could diagnose anyone!)

In the beginning of my illness when I was more severe, when I had blood drawn, I saw that the color of my blood was first a rusty brown orange, then a milky purple and glopped out of the line into the tube with the consistency of a blueberry yogurt drink. I sat there looking at that and wondered how I was alive. Later the color and consistency turned back to something that looked normal although I wasn't that much less severe and I don't know if it had to do with any treatments I tried.

 

[gregh286]

@drob31, @aquariusgirl

Yes, supplemental taurine could help in many areas. Usually, a 500 mg. dose would be the place to start, though if someone is very sensitive, a partial amount of that could be used.

@aquariusgirl, if those values are correct (high taurine output), that makes sense. Over the 30 years of my wife's [@PWR (Peace without Rest)] illness, she has used taurine for detoxing after chemical exposures (due to MCS) and for sleep. Right now, she can tolerate large doses (5 grams or more per night), or maybe she's wasting so much, she's using it up too fast!

Unlike other sleep-inducing amino acids, taurine doesn't cause much the typical grogginess. It's also a key component of bile, and if my memory serves me, Dr. Naviaux found a deficiency of bile metabolites in the Severely Ill study.

P.S. I just added this: If using taurine for sleep, be aware that (in large doses) it will stimulate bile and urine flow, so use only what's necessary to avoid unintended bodily functions at bedtime.

@RWP + PWR

Yea i just started taking taurine again. 5g a day.
Looking back on my amino profile i was borderline low on taurine. 103 against 80-545

 

[anni66]

His first work was submitted mid-80s on cell deformality....over 30 years.
My guess is CFS was hugely dismissed as mental back then and any speculative physical findings or discoveries just petered out. There was no medical drive or pressure to pursue it from any medical bodies with real influence. Too busy with HIV at the time.

Medical technology has evolved somewhat also since this period as well.

Doesnt really explain how symptoms can wax and wane quite dramatically. So one day rbc are worse shaped than others, or stiffer etc.? Finding that immune mechanism that drives this is a tougher part.

Yes - same with the autoantibody proposal by Prof Behan in 1980s- now being reconsidered. ... Research is also limited by the tools available to test such theories, we have a different level of equipment now - hopefully this will yield results that can inform actual treatment options

 

[aquariusgirl]

Yea i just started taking taurine again. 5g a day.
Looking back on my amino profile i was borderline low on taurine. 103 against 101-540.

Blood, urine?

 

[gregh286]

Blood, urine?

Urine fmv. Genova. Range is 80-545 not 101-540 as i wrote.

 

[aquariusgirl]

Not sure how useful urine is... I was just talking to my doc about this...you could be wasting it..or. can't remember the full explanation.

I think you need blood and urine at the same time.....

 

[gregh286]

Not sure how useful urine is... I was just talking to my doc about this...you could be wasting it..or. can't remember the full explanation.

I think you need blood and urine at the same time.....

Prehaps. This was done a few years back. You know how it is when you get cfs. You believe if you do enough tests something gives. Clutching straws at will or a fishing expedition

 

[ash0787]

Looking at symptoms its easily and highly conceivable that blood flow in capillaries is not efficient. Numb hands..cold feet....ashen faced...weak pulse...muscle weakness....its endless.
Lot of these symtoms are similar to very low taurine. Responsible for maintaining cell volume..membrane flexibility....electrolyte homestatis..
Quite a few people here get real thirsty in bad crashes myself included. Water in just gets dumped out almost instantly via urine.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2269780/

I get the opposite, overly strong pulse which is rarely ever seeming 'normal', sometimes it makes it hard to go to sleep, and the rate is usually 10% + more than normal, 20 to 30% quite often, on rare occasions though its 75%+ faster, which I call 'POTS'. These things should be detectable by standard equipment but when doctors have used a stethoscope they don't seem to notice a difference. Also this is while taking beta blockers so god knows what it would be like without.

 

[gregh286]

I get the opposite, overly strong pulse which is rarely ever seeming 'normal', sometimes it makes it hard to go to sleep, and the rate is usually 10% + more than normal, 20 to 30% quite often, on rare occasions though its 75%+ faster, which I call 'POTS'. These things should be detectable by standard equipment but when doctors have used a stethoscope they don't seem to notice a difference. Also this is while taking beta blockers so god knows what it would be like without.

Yeah i get that also. One extreme to other. Tend to get faster HR after carby meals. Can happen in middle of night too with night sweats....can be quite unnerving to say the least.
Feels as if body drifts into panic mode.. like adrenaline surge or whatever.. The long list of non exhaustive symtoms eh....

 

[Nine lives]

In the beginning of my illness when I was more severe, when I had blood drawn, I saw that the color of my blood was first a rusty brown orange, then a milky purple and glopped out of the line into the tube with the consistency of a blueberry yogurt drink. I sat there looking at that and wondered how I was alive. Later the color and consistency turned back to something that looked normal although I wasn't that much less severe and I don't know if it had to do with any treatments I tried.

I have had blood draws where I look at blood vials and think blood slightly strange color (to the point I think to myself this does not look healthy). I noticed a cool red, darker than normal ( I am artist so attuned to color). Interesting, I found there is a condition called methemoglobinemia, where the iron has been changed from +2 to +3, which inhibits hemoglobin transporting oxygen. What caught my eye for the acquired form was some of chemical triggers are benzene derived. MCS tigger for me. Not sure is this is related but I have a huge problem with benzoate's also.

 

[Awags1986]

I believe, as Chris Armstrong says here-


http://forums.phoenixrising.me/inde...20-2016-metabolomics.47485/page-6#post-791828

Coagulation problems in sepsis are well known-


https://www.sciencedirect.com/science/article/pii/S1875459714001106

I think a low grade sepsis might be the cause of the "sticky blood". I Also think it's the reason they can't find any pathogens. Because there are none in the blood, only lipopolysaccharides (LPS) from gram negative bacteria in the gut, leaking into the bloodstream, causing an immune system reaction.

Just one more thought. LPS can also cause the Warburg effect, also known as the "cell danger response".


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4493277/#__sec3title

My uncle passed away from complications of what they believed to be Auto Immune hemolytic Anemia that was unresponsive to medications....Is that similar to DIC? His hemoglobin was 6 at one point...

 

[ljimbo423]

My uncle passed away from complications of what they believed to be Auto Immune hemolytic Anemia that was unresponsive to medications....Is that similar to DIC? His hemoglobin was 6 at one point...

Hi Awags1986- Sorry, I really don't know any more about blood clotting disorders than the little I read, when I was reading about sepsis.

Jim

 

[gregh286]

My uncle passed away from complications of what they believed to be Auto Immune hemolytic Anemia that was unresponsive to medications....Is that similar to DIC? His hemoglobin was 6 at one point...

My father.in law had that last year. Treated successfully with rituximab.
His colour (palor) was awful other than that he didnt really know he had anything wrong..just a little.more tired.

 

[bertiedog]

Beta blockers mostly help because they manage tachycardia and POTS. Propranolol specifically is one of the rare beta-blockers that crosses blood-brain barrier so it potentally also lowers hyperreactivity of the nervous system and helps with dysautonomia.

I have been taking a daily low dose of Propananol with good effects since around 2000. It always makes me feel a bit better without side effects. At the moment its only 10 mg first thing in the morning but when it gets hot I need another dose.

Pam

 

[Awags1986]

My father.in law had that last year. Treated successfully with rituximab.
His colour (palor) was awful other than that he didnt really know he had anything wrong..just a little.more tired.

Thank goodness he responded to medications! My uncle was at a small community hospital outside of Detroit, and I honestly feel that if he had been somewhere like U of M that it wouldn't have all gone downhill so quickly