• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

ESR - always low in ME??

CantThink

Senior Member
Messages
800
Location
England, UK
It seems to be a common enough finding to be noteworthy but it would never rule out ME. It's possible to have ME and something else wrong with you that would drive up the ESR.

Yeah I wonder about the 'else wrong' - when I got sick, I didn't seem to have anything else wrong other than M.E.. Makes me wonder about unobvious co-infections causing the ESR to be high then. Later as other things went wrong and I gained more diagnoses, I feel the ESR result became clouded by them - so much harder to pick apart what's what.

May be of note - I respond very well to LDN.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Hey, all. I've had actually really low ESR, and also really low C-reactive protein. Like, barely detectable. Mean anything, or just another bit of random static on the radar?
 

Cheesus

Senior Member
Messages
1,292
Location
UK
Hey, all. I've had actually really low ESR, and also really low C-reactive protein. Like, barely detectable. Mean anything, or just another bit of random static on the radar?

My ESR was 0.1 the first time it was checked. I thought it was actually a positive thing.

C-reactive protein on the other hand, has a happy medium I believe. Sorry I can't advise on what a low figure would mean.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Thanks @Cheesus -- generally both ESR and CRP being low IS considered a 'good thing' by mainstream medicine. That's because we are generally fat and sedentary, lol. It's like cholesterol -- most physicians don't even consider that low cholesterol could be a problem, because they're so used to seeing it high... despite the fact that cholesterol is responsible for hormone production, cell membrane fluidity, and is an important anti-inflammatory agent.

PWME seem to generally have a very low ESR (though on these boards a few have reported high out-of-range). The issue is that there is no recorded 'too low' for either ESR or CRP.

-J
 

Cheesus

Senior Member
Messages
1,292
Location
UK
Thanks @Cheesus -- generally both ESR and CRP being low IS considered a 'good thing' by mainstream medicine. That's because we are generally fat and sedentary, lol. It's like cholesterol -- most physicians don't even consider that low cholesterol could be a problem, because they're so used to seeing it high... despite the fact that cholesterol is responsible for hormone production, cell membrane fluidity, and is an important anti-inflammatory agent.

PWME seem to generally have a very low ESR (though on these boards a few have reported high out-of-range). The issue is that there is no recorded 'too low' for either ESR or CRP.

-J

You say in your recent article for MEAction:

Naviaux’s team noted that the pattern in ME patients was almost the exact opposite of that found in systemic inflammatory conditions such as metabolic syndrome and heart disease.

http://www.meaction.net/2016/08/30/naviauxs-metabolism-paper-is-about-as-big-as-you-think/

Could this counter-intuitive response be the cause of low ESR and CRP?
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Shot in the dark, hypometabolism of ADH (antidiuretic hormone) ensuring we keep a low blood volume and sludgy blood that is hard for pathogens to travel through.

That's one theory JaimeS and I'm not dismissing it, as I'm sure you know POTS patients (I have POTS) can have altered Renin/Aldosterone (backwards finding from expected) and low ADH. Personally I think POTS is a 'consequence' of ME, e.g. just one of the Autoimmune diseases we may develop.

So you could argue our bodies sense this infection, and try and block it by some adaptive response, however, you could also argue no it's due to inflammation.

Inflammation can cause 'sticky blood', perhaps in our cases (or subsets) associated to pathogens like Bartonella infection that infect lining of blood vessels.

My ESR is usually low or zero, but my plasma viscocity is always elevated without fail.

This interests me as plasma viscocity is an alternative test to ESR, but isn't common as it costs more and takes more time to perform.. As I'm not uniquely ill, I wonder if others may have found this too or even over looked it? (normal ESR but high plasma viscocity).

Have you tested your plasma viscocity out of interest? To be scientific, we'd have to ideally test it alongside ESR on the same time of day, I understand due to cost this is probably nor realistic, but it's an idea at least.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
That's one theory JaimeS and I'm not dismissing it

....but you do already sound quite convinced! ;)

For serious, though, I'm not deeply attached to this theory!

I'm sure you know POTS patients (I have POTS) can have altered Renin/Aldosterone (backwards finding from expected) and low ADH. Personally I think POTS is a 'consequence' of ME, e.g. just one of the Autoimmune diseases we may develop.

It seems to me like we're saying the exact same thing using different 'language'. :hug:

You're saying that ADH might be low in ME; so am I. POTS is heterogeneous, so we couldn't say ADH is low 'because' of POTS.

Even if it were 'because' of POTS, that wouldn't rule out that this is an evolutionary attempt to limit the access of a pathogen. I feel like we're both looking at the same building but you're looking through the third-floor window and I'm looking through the first-floor window.

I think I've only had ESR / SED tested. :)

-J
 

Isaiah 58:11

Senior Member
Messages
116
Location
A Sun-Scorched Land
Hey, all. I've had actually really low ESR, and also really low C-reactive protein. Like, barely detectable. Mean anything, or just another bit of random static on the radar?
I am not sure about the CRP, but I am certain that the ESR means something. My usual "functioning" ESR is 2, but someone hauled me out of bed during one of my worse periods and found it to be one. I would take that as totally insignificant except that at some point I was told I had a load of active infections and put on antibiotics for months. After six weeks of hell on earth I felt much better (I chased my kids through a park!) and my ESR had risen to a 3 or 4 though my VEGF remained low throughout. Too bad I lost all gains a month or so after stopping the antibiotics... Anyway, during the fluctuations, it really seems like I could feel the difference as far as feet being less cold, scalp needing/not needing massage to force blood flow, etc.

Thanks @Cheesus -- It's like cholesterol -- most physicians don't even consider that low cholesterol could be a problem, because they're so used to seeing it high... despite the fact that cholesterol is responsible for hormone production, cell membrane fluidity, and is an important anti-inflammatory agent.
-J

Can you please tell me more about this or link me to easy-to-digest information? I am now on Spironolactone so I likely have a wacked out cholesterol profile, but I was told years ago by a doctor that I had the lowest cholesterol she had ever seen (which she took to be a good thing). I certainly have hormonal issues and inflammation (TGFb1 40,000 - >60,000 on occasion), and gallbladder problems which, for some reason, I think may be related.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
I forgot if I typed this, probably did, but an alternative, older, and more expensive test I find that works is called a 'Blood Viscosity test'. Mine is always high, and by ESR is normal or abnormally low, sometimes, 0.0. Only once it's been borderline high, despite being plagued by infections, temperatures and inflammation.
 

tinacarroll27

Senior Member
Messages
254
Location
UK
My ESR was high in the first year at 35. Then it fell to 28 and then 21, at the moment it is 18, so I have never had low.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Can you please tell me more about this or link me to easy-to-digest information?

Probably an explanation is better. Most articles as mentioned just say how terrible cholesterol is, and that it should be put to death with statins. ;)

Cholesterol is an important part of cell membranes.

main-qimg-98b515307732c6b24e5cd66ca9ad62b5.webp


If it's been awhile since high school chem, those little guys with a head and two tails are phospholipids, and when they face each other like that, it's the lipid bilayer: the thing that makes up the cell membrane in our cells. The geometric yellow things wedged within the membrane are cholesterol.

Not only does cholesterol maintain the fluidity of the membrane so that it doesn't break apart; it has an effect on receptors, keeping them a certain distance apart in the membrane and thus ensuring that they are not hyper- or hypoactive. More on cholesterol's general function here.

Cholesterol is also the mother-molecule for all steroid hormones, and is considered a steroid itself.

steroidogenesis.gif


So cholesterol gives rise to cortisol, estrogen, testosterone, aldosterone, progesterone... a lot of important molecules for endocrine function. More on that here.

Finally, at least the "good" cholesterol is a steroidal anti-inflammatory. More on that here.

I think it's more meaningful to view cholesterol as a sign of increased inflammation -- a canary-in-a-coalmine-warning -- rather than as a primary source of disease. The distinction may be academic, since it can clog arteries, but that may be because there's inflammation there, not because the cholesterol itself is the problem.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Most of my organs are in a constant inflammatory state, most likely autoimmune driven.
Yet my ESR is usually 1 ~ 2 and my CRP always <0.1
So it must be psychological!
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My ESR was 2 for the past 2 years, but recently, it went up to 40, when I'm better than I was, but still not cured. CRP is .6, and its varied over the same time period between .18 and .8.