Low Sed Rate = Hyperviscosity?

[Sushi]

But what about whole blood viscosity testing in ME/CFS.
Anybody know what those outcomes are generally? Has anyone done whole blood viscosity testing?

I had the ISAC panel which I think is whole blood. It tests 4 coag factors that are commonly found in ME/CFS patients. It was put together by Dr. David Berg who found that the majority of ME/CFS patients had hypercoagulation--according to this test anyway.

I'm asking because I've always felt better (less pain, more energy) with low doses of heparin. I don't have a hypercoag problem, but the heparin does help.

I did test as having hypercoag, had a SED rate of 1 or 2, was given injections of low molecular weight heparin for 7 months and that gave very noticeable improvement.

 

[out2lunch]

*Generally*, there were some studies done back in the day, esp in Australia, where they found RBCs were generally not discoid but far more likely to be one of the other, less common, spikier shapes. I speak very technically, I know.

Research dead-ended. I spoke to KDM about it once. I said, "a few papers, all of which confirmed findings, followed by radio silence. Was it disproven?"

"No, I don't think so," he said.

"Then why the sudden stop? That sounds like a fruitful path to keep exploring."

He replied that odd things happen to stop a particular line of inquiry that have nothing to do with the quality of the research itself. Funding dries up; the researcher who was really into that as a hypothesis for some symptoms retires or passes away. Sometimes good research is stopped for what amounts to no good reason.

-J

Lack of funding.
'Tis the ME/CFS chronic heartbreak.

 

[out2lunch]

I had the ISAC panel which I think is whole blood. It tests 4 coag factors that are commonly found in ME/CFS patients. It was put together by Dr. David Berg who found that the majority of ME/CFS patients had hypercoagulation--according to this test anyway.
I did test as having hypercoag, had a SED rate of 1 or 2, was given injections of low molecular weight heparin for 7 months and that gave very noticeable improvement.

Funny you mention Berg and Hemex. I had my blood drawn there, well over a decade, when visiting my mom in AZ. (Very cool wall of photos of new moms and their newborns who did the hypercoag treatment thing for infertility!)

Anyway, that was my first ISAC, and I was mildly hypercoag. So I did the low dose heparin thing, and it definitely helped. Unfortunately, it also improved blood flow to my ovarian remnants which started functioning again. (Ovarian cysts trapped under scar tissue is one of those "Shoot me now!" pain scenarios, akin to acute appendicitis.)

OK, so stopped the heparin. Remnants eventually quiet down. But pain began to worsen several years later. So… repeated the ISAC. And it was normal. No evidence of hypercoag at all. But doc knew it helped before, and suggested trying the heparin again. And even though the ISAC panel was negative, I felt better. But after a few months, well… stupid remnants started functioning again. So, off the heparin.

I've been on and off heparin over the years; mostly off. But it does make me wonder why I respond to it, even small doses, if I don't have a hypercoag problem. I've had just about every coagulation test out there in the past five years, and all of them have been normal. Not even slightly out of range. But the heparin does help. And no way I'm the lone ranger here.

Jaime's post about lack of funds really puts the whole thing into perspective. Something is definitely going on with folks like us. And the low sed rate is like the cherry on the stinkin' ME/CFS pain parfait. (Now I'm hungry.) We all have it! All of us! BUT WHY!

 

[JaimeS]

I was just thinking to myself, @out2lunch ... all these bits and bobs, eh? There's definitely a problem making certain proteins properly, which does at least imply errors in DNA accumulating over time, a la a DNA methylation problem? Perhaps. This is one of those things that gives me real trouble regarding how it fits into the overall 'big picture'.

However, I did something that someone with POTS is never supposed to do: I took a vasodilator rather than a blood thinner.

And lo, did it help.

-J

 

[Sushi]

I've been on and off heparin over the years; mostly off. But it does make me wonder why I respond to it, even small doses, if I don't have a hypercoag problem.

And it is entirely possible that it was some other quality of heparin that helped me--rather than the anti-coag aspect.

 

[JaimeS]

And it is entirely possible that it was some other quality of heparin that helped me--rather than the anti-coag aspect.

For sure. Heparin is anti-infective too.

 

[halcyon]

Lack of funding.

It's even more disappointing than that. I assume @JaimeS is talking about Les Simpson's research. If I recall correctly he had multiple research papers on ME flatly denied by journal editors or had the titles changed to where they wouldn't be obvious when searching for ME research.

 

[halcyon]

My ESR, like most ME/CFS folk, has always been under 4, usually at 1 or 2. I've only seen it higher than 4 once, at 7. This time, it was at 2.

But my serum viscosity was below the normal range of 1.6 to 1.9, at 1.4. Granted, that isn't a huge step outside the range. But it's a narrow range to begin with. And given the discussion in this thread, I was expecting to be above the normal range, because of my low ESR.

At onset my ESR was 1 and then 2 a few weeks later. I had serum viscosity measured many months later and it was 1.8, same reference range as yours. Sadly I didn't get ESR measured again at the same time.

 

[out2lunch]

It's even more disappointing than that. I assume @JaimeS is talking about Les Simpson's research. If I recall correctly he had multiple research papers on ME flatly denied by journal editors or had the titles changed to where they wouldn't be obvious when searching for ME research.

That totally sucks!

I think y'all can count me into this club: the ME/CFS folks who believe that circulatory problems are a major component to our illness. And how frustrating that this issue seems to get very little respect in the medical community, either from the practitioners or the researchers.

I know my own specialist, who thoroughly understands the traditional CVD stuff, does not live on this street. He's a good functional medicine doc. But these issues aren't part of his training or experience. He understands that low dose heparin makes patients like me feel better, but… that's as far as it goes. He has no real insight into why the heparin helps, what faulty mechanism is being overridden so that the blood flows more easily.

In terms of all these other weird things I deal with (tachycardia and hypertension with constipation, resting bradycardia, lower extremity neuropathy-like numbness that testing proved is not neuropathy, pelvic floor pain that's not trigger point related, et al) I'm now confident that circulation is the root of the problem. Not spasmed muscles or tight fascia, or active trigger points, or damaged nerves… but lack of adequate blood flow, especially in the capillary bed, that results in those problems. As well as lack of adequate blood flow through the organs: liver, kidneys, digestive track, bladder, and heart. (Obviously the brain takes a hit, but my recent problems have been more focused below the neck.)

The far infrared sauna helps but it's not enough. Low dose heparin helps but it's not enough. Fish oil and low dose white willow bark (aspirin) helps but it's not enough.

There's a dead rat in our circulatory system, clogging up the pipes. But no one has been able to find the rotting corpse and help us turn things around. Maybe there isn't a solution; maybe our plumbing is physiologically screwed up at a very basic level. (Yes, I've been diagnosed by an EDS specialist with HEDS. But I'm not thoroughly convinced this is a major factor, since none of the experts seem to believe that venous or arterial tissue is altered that much with hypermobility EDS.)

What do you all think about this? What are your personal thoughts on why the vast majority of us have such low ESR rates and no one seems to know why? I do believe this is an important issue but no one wants to address it anymore.

 

[out2lunch]

At onset my ESR was 1 and then 2 a few weeks later. I had serum viscosity measured many months later and it was 1.8, same reference range as yours. Sadly I didn't get ESR measured again at the same time.

There you go. ESR in the basement but serum viscosity is normal.

So if the blood isn't flowing well through the plumbing… does the problem lie with the red blood cells? Are they damaged? Less flexible? Too sticky?

And that's why heparin works, because it thins up the liquid part of the blood so the stiff and sticky red blood cells can move more freely? Even if it means higher risk of hematoma from the heparin use? (Voice of experience: stop the heparin before dental work. I got a nasty hematoma in my lower jaw from the novacaine injection. Very painful lump; took six months to absorb. )

 

[Sushi]

And that's why heparin works, because it thins up the liquid part of the blood so the stiff and sticky red blood cells can move more freely? Even if it means higher risk of hematoma from the heparin use?

I am now taking Pradaxa. I'm not sure what the differences are between it and Heparin, but it can be antidoted if necessary.

 

[halcyon]

At onset my ESR was 1 and then 2 a few weeks later. I had serum viscosity measured many months later and it was 1.8, same reference range as yours. Sadly I didn't get ESR measured again at the same time.

Just had my sed rate measured again and it's still 2. Also hematocrit, MCH, and MCV all high. Not sure if this relates or not.

 

[Gingergrrl]

Just had my sed rate measured again and it's still 2. Also hematocrit, MCH, and MCV all high. Not sure if this relates or not.

I wish I knew what all of this stuff meant! My SED rate was 6 when measured in March and I did the whole anti-phospholipid panel (which came back normal) just b/c blood clots can be a risk with IVIG but according to my tests, I am not at a risk for blood clots. If anything I seem to be the opposite b/c I have unexplained bruises on my legs again which seems to imply my blood might be too thin (but am really not sure if this is correct either)?

Did your doctor have any interpretation of the low SED rate? I was told 6 was normal in my case and nothing further was said about it.

 

[halcyon]

Did your doctor have any interpretation of the low SED rate?

I haven't talked to my doctor about the most recent results yet.

 

[JaimeS]

New results: I'm doing better lately, and SED rate is now higher: up to 6mm/hr.

 

[Gingergrrl]

New results: I'm doing better lately, and SED rate is now higher: up to 6mm/hr.

My SED rate is also six (no idea what it was before) and I had it tested along with the anti phospholipid panel (which was normal) prior to IVIG to make sure I was not a blood clot risk.

What was your SED rate before (when you felt sicker)? I am still unclear if it is a marker or a definite connection to having ME/CFS or just a theory?

 

[JaimeS]

It was 2 and 3 when I was sickest. Then it was 4 for quite some time. Now, it's 6. In my case, it seems to relate to symptoms. Studies definitely showed hyperviscocity correlates to ME, but as I recall, I haven't seen anything that correlated it to severity.

J

 

[patolos]

I think y'all can count me into this club: the ME/CFS folks who believe that circulatory problems are a major component to our illness.

Same here, I am certain circulation is a major component if not fully the problem.

 

[TrixieStix]

I think this is the Cheney observation (http://www.dfwcfids.org/medical/cheney/heart04.part2b.htm). I started writing this about ESR last year but didn't post ...

I haven't had blood tests for years, but in all the tests I did have in the past, ESR was always 1mm/hr except for one occasional when it was 3mm/hr then back to 1mm/hr. I don't think I've been tested for plasma viscosity, I'm aware of most of the tests I've had, there may have been an occasion or two where I didn't have access to the test results eg during a GET program. There are many similar anecdotes from patients and doctors alike that ESR or SED (erythrocyte ie [red blood cell] sedimentation rate) is commonly very low in ME/CFS. I tried to find some sources for this:



However, I have not been able to find published studies which back these claims up about ME/CFS and low ESR. It is such a common test for routine medical assessment that there should be literally thousands of CFS studies with unpublished data on it. Yes, some ME and CFS patients have repeatedly tested very low ESR (0-3mm/hr), but from the limited amount of studies I have seen which do mention ESR (eg data from p124 of the original Canadian 2003 definition), this does not seem common enough to use as a litmus test, if anything it was slightly higher than healthy controls on average, with a standard deviation which would not suggest that lots of ME/CFS patients with lower ESR are being averaged out by lots of patients with higher ESR.

And shouldn't many of the possible causes of low ESR be detected in routine medical assessment and exclude one from a CFS diagnosis? Perhaps those of us with very low ESR do not have "CFS" but some underlying but undetected disease and we were dumped in the CFS wastebasket? Or perhaps ME commonly involves low ESR but CFS does not? I have purchased nattokinase and lumbrokinase for the hypothetical hypercoagulation but haven't really tested them yet. I once tried a dose of the former and coincidently noticed a similar sensation in the sinuses that I get from aspirin.

So glad I happened upon this thread. I have both Hereditary Spherocytosis and ME/CFS. My SED/ESR rate is currently 2 and before I got ME/CFS it was 5. So glad to learn HS causes low SED rate. I am wondering if that means my results of 14 and 15 during some major health flares of some sort would then be "abnormal" for me even it they would not be for a normal person? I am going to ask my doctor about this as I still have suspicions something else besides or in addition to ME/CFS is going on.