Why might people with XMRV have a low ESR?

[bullybeef]

Awol has pointed me to this thread, because my last two ESR readings were high, my last was 22mm/h. Could this mean I may have avoided the XMRV infection?

My pain is quite specific, and sometimes severe. One therapist suggested I could have fibro, as well as ME. Maybe this is the solution?

 

[VillageLife]

my last ESR reading I had was 20mm/h and I was 17....I think ESR indicates that you have some inflammation, somewhere in the body- but it doesnt point you to where the problem is!

 

[awol]

Awol has pointed me to this thread, because my last two ESR readings were high, my last was 22mm/h. Could this mean I may have avoided the XMRV infection?

My pain is quite specific, and sometimes severe. One therapist suggested I could have fibro, as well as ME. Maybe this is the solution?

bullybeef, I don't think high ESR rules out ME/CFS or XMRV necessarily, because there could still be something else going on on top. But high DEFINITELY means you should amp up the search for more treatable conditions to take care of. Good luck!

 

[DysautonomiaXMRV]

My ESR last time I looked on a pathology print out, was 1.

Interesting info from Kurt (thank you) I thought.

I had a RBC cell test done for morphology changes and it was over 80% altered shape of my RBC.

My result was Ignored by British department of health, as was low NKC function which I have in writing they don't know about so
recommended Anti Depressants.

Interestingly my mum was tested also, and she has an equally bad result (On RBC shape change test), but isn't as sick, although she meets the criteria for CFS (not ME however).
If she is also XMRV+ this could be quite interesting to link XMRV to the phenomena? found in people with the label CFS and ME.

 

[bullybeef]

DysautonomiaXMRV, what is the morphology RBC test called?

 

[DysautonomiaXMRV]

I don't know bullybeef, sorry. I sent my blood off to New Zealand to Dr Les Simpson who is now long retired due to lack of funding.
(He had an interest in RBC morphology and CFS).

There is an interesting and comprehensive write up here you may wish to peruse at your leisure.

Also some other finds that may be of use, if the first extensive link above is lacking in some way:

Radio transcript interviewing Dr Les Simpson, back from 1999
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind9905D&L=co-cure&P=R356

Other info:
http://www.cfidsreport.com/Articles/researchers/lessimpson.htm
http://www.voxau.com/fib/fibro/71les1.htm
http://www.nor.com.au/~nrmecfs/research.htm
http://valdezlink.com/pages/bloodME.htm

All the best.

 

[muffin]

My ESR when first sick w/ CFIDS was 3. After three years it went up to 17. My internist knew that the lower the ESR the sicker the person. When he saw mine had gotten up to 17 and I agreed I felt a bit better, we knew I had made a small step upwards from 22 hours/day of sleeping.

Now I wonder what my ESR would be after 16 years of CFIDS. I also wonder if being sick for so long has allowed the XMRV to "hide" or embed into the DNA/RNA or whatever it embeds into.

 

[glenp]

HM Interesting Muffin - I was also sleeping most of the time - was only up when necessary - that has changed, last summer that symptom reversed

glenp

 

[bullybeef]

I don't know bullybeef, sorry. I sent my blood off to New Zealand to Dr Les Simpson who is now long retired due to lack of funding.
(He had an interest in RBC morphology and CFS).

There is an interesting and comprehensive write up here you may wish to peruse at your leisure.

Also some other finds that may be of use, if the first extensive link above is lacking in some way:

Radio transcript interviewing Dr Les Simpson, back from 1999
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind9905D&L=co-cure&P=R356

Other info:
http://www.cfidsreport.com/Articles/researchers/lessimpson.htm
http://www.voxau.com/fib/fibro/71les1.htm
http://www.nor.com.au/~nrmecfs/research.htm
http://valdezlink.com/pages/bloodME.htm

All the best.

Thanks for the info, dys. Sorry I havent replied, ME issues, PC problems, and my screwed up brain forgot all about the thread!!

Ill have to remember to have a proper look 2moro (if my brain can remind me)!!

 

[muffin]

Glenp: How did the symptoms "reverse"????? Hope you are not sleeping 20/22 hours a day. So not a life. How are you feeling now??????

 

[justinreilly]

Low sed rate can have many different causes. The one that makes sense to me is that PWCs often have abnormal RBC shapes (nondiscocytes), which is one possible explanation for low ESR. Of course then the question becomes how to explain the abnormal RBC shapes in ME/CFS.

I agree.

Cheney first noticed about 90% of his ME patients had sed rates of 0-2. Mine has always been in that range. Noone believes or has said that a high sed rate rules out ME.

Since this test is normally done in a standard blood panel anyway, I think it should be officially considered (as one of many factors) in diagnosis- again with the proviso that a high sed rate does not rule out ME.

 

[justinreilly]

Interestingly my mum was tested also, and she has an equally bad result (On RBC shape change test), but isn't as sick, although she meets the criteria for CFS (not ME however).
If she is also XMRV+ this could be quite interesting to link XMRV to the phenomena? found in people with the label CFS and ME.

Sorry if i'm nitpicking, but i think it's important to mention that you are using the Oxford or NHS definition if you are since Americans and some others will be confused (this confusion was intended by Sharpe et al. when they came up with and use the definition).

 

[taniaaust1]

Hi, all.

Here is some history concerning low sed rate and CFS: David Berg, who used to be the owner of the Hemex lab in Arizona, and later sold the lab and is operating now as a consultant, developed the concept of ISAC (Immune System Activation of Coagulation) several years ago, and published at least one paper on this in connection with CFS.

The idea is that the immune system normally promotes some deposition of fibrin in the capillaries when an infection is present, in order to confine the pathogens. This is a normal action.

However, some people have inherited one or more mutations in the proteins that are involved in the coagulation cascade, so that their immune systems promote too much fibrin deposition. This ends up obstructing the diffusion of oxygen from the capillaries into the cells.

David noted a correlation between low SED rate and the presence of ISAC. If the SED rate is below about 4 or 5 mm per hour, ISAC is likely. The tests involved in checking for ISAC were fairly expensive, and some doctors just checked for SFM (soluble fibrin monomer) first. If this was elevated, then they might test further.

The treatment for this was low-dose heparin, and later people started using nattokinase, serrapeptase or lumbrokinase. It was found that it was important to treat to limit the pathogens when using these anticoagulants, or otherwise the pathogens would propagate and the ISAC would become worse. So people used transfer factors together with the anticoagulants, and that seemed to help quite a few people.

It's true that most conventional doctors don't recognize a low SED rate as being indicative of anything abnormal. They have been trained to look only for high values, as an indication of inflammation or infection.

Not all PWCs have a low sed rate, as has been noted. According to David Berg, it depends on whether the person has also inherited mutations in one or more of the proteins in the coagulation cascade.

Best regards,

Rich

umm my case dont really fit into that if i read it right (not 100% sure if i fully understood). i have high ESR at 21 (it goes up more each year) ... i also have fast coagulation with my blood clotting faster then the normal range... in my coagulation study result it says my Prothrombin Time is 12.9 (normal is 13 to 15.5)

 

[sickness]

The Quote from Dr Cheney's The heart of the Matter is " THREE WAYS TO BLOCK NITRIC OXIDE 1) Hemoglobin The best endogenous scavenger of nitric oxide is hemoglobin. [Hemoglobin is the “red” in red blood cells – a protein that transports oxygen from the lungs to the tissues.] “When hemoglobin scavenges nitric oxide, the nitric oxide bends the hemoglobin, causing the red blood cells to deform. Dr. Les Simpson in New Zealand found that the red blood cells of CFIDS patients were deformed, and when they’re deformed they can’t get through the capillary bed very well and can cause pain.” “An indication of this [RBC deformation] is it also drops the SED rate. CFIDS patients have the lowest SED rates I’ve ever recorded, and the ones with the lowest SED rate may have the greatest degree of pain.” [SED rate refers to sedimentation rate, and is listed as ESR on many lab tests.] “Do you know what your SED rate is by chance? Normal for you would be 15 plus or minus 5. That’s according to the British literature. A female your age has a higher SED rate than children and males. And you’re probably down around 0 to 3. Which means you have Nitric Oxide binding hemoglobin, and therefore you have an induced hemoglobinopathy, and red cell deformation and a low SED rate on that basis.” In the Laboratory Textbook of Medicine there are only three diseases that lower the SED rate to that level. One is Sickle Cell Anemia, a genetic hemoglobinopathy. The second is CFS, an acquired hemoglobinopathy – acquired by Nitric Oxide binding. And guess what the third disease with a low SED rate is? Idiopathic Cardiomyopathy! The more deformed red blood cells you have, the more pain you may experience. It’s bad enough when you don’t perfuse your muscles and your joints [because of poor microcirculation], but it’s even worse when your red blood cells are so deformed that they can barely get through the capillaries, or are blocked entirely. Some CFIDS patients have a problem similar to that of Sickle Cell patients in this regard, and Sickle Cell patients have unbelievable pain - you have to give them IV morphine and fluids. That’s how they’re treated."

When I was working in Haematology the lowest ESR I ever saw was my own. From memory it was around zero. It makes sense that the red cells are deformed due to nitric oxide. I agree that it is definitely not going to be the same in everyone though.

take care, ness

 

[biophile]

Since ESR is a common screening test which studies should have used to help rule out other diagnoses, there should be mountains of unpublished data on ESR in CFS patients. Any CFS research group would just have to analyse this data, which wouldn't be that difficult. If very low ESR is as common in CFS as anecdotal evidence suggests, a pattern should emerge.