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why are tests for inflammation so often negative in cfs/me?

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
inflammation tests? and why so often negative in cfs/me?

Hi
I thought about getting retested for inflammation since I found out last year have sjogrens (that was thru having a positive ssb/la not from an ana). when I had the regular panels over the years in past I guess they never flagged anything to my docs thru sed or ana, and when I asked about getting a new panel this year doc said I had one in 2004 and 2006 and he seemed to think that should have been recent enough....but some symptoms are different now and I am wondering if maybe some subclinical stuff from past will show up now with some new symptoms (dermatologic ones and weight gain etc)........yet I dont want to push for it if its just negative again cus thats sort of disheartening.

does anyone know why so often a lot of people with cfs do have normal bloodwork for most mainstream tests? and also what tests for inflammation do you recommend if you are enlightened in this area, are there ones better for getting at it in CFS than the standard panel they give most people at their physical ? ( I forget what you call it, cbc or wbc or something?)

An aside, I saw in the news today that blood tests for "depression" may come out and when googled it found stuff like old article in psych today about inflammation and depression being linked, very interesting.

http://www.psychologytoday.com/blog...epression-inflammation-immunity-and-infection

Its always made sense to me that one's brain, being an organ, could go haywire or feel bad too when one has some physical illness, why wouldnt it? yet with CFS we feel the need to defend ourselves so much from the psych-only pushers like Reeves and Wesleyites that I know, for me anyway, I don't even like to admit it to docs or anyone anymore if I do feel bummed out, dont want to get discounted in other regards.

I don't understand why issues that effect the mind and emotions are arbitrarily thought of as less physical or valid than ones that effect primarily other organs or systems so often. still definitely a stigma.....yet so many things, even obesity or heart disease in some cases are triggered by viral or bacterial infections.

anyway, if anyone knows why often are seds or ana don't flag things and/or can recommend other tests or more specific ways to get at it for m.e. pls comment.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Inflammation is local. That is the primary problem. There are some generic markers, but most are local. So they need to do biopsies, and run the right tests, but to do that they have to figure out where to do the biopsies - it does no good to randomly biopsy different parts of the body.

Some inflammatory chemicals also have very short half lives. They dont survive much longer than minutes. It takes sophisticated tests to detect them.

So they look for secondary markers of inflammation, such as T cell activation.

Bye, Alex
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
hey thanks Alex, its not my field of expertise.

Have you had any tests done? Any ones and anywhere you recommend? Does mainstream medicine have a way to look for it that makes sense for us?
 

svetoslav80

Senior Member
Messages
700
Location
Bulgaria
I have 2 chronic inflammatory conditions - prostatitis and esophagitis, and some of the generic markers for inflammation like ESR and C-reactive protein are always negative for me. Unfortunately it's not just a problem with ME/CFS.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
thanks for putting it in perspective, that helps me understand
its good they could still diagnoise you svetoslav without the inflam markers, but sorry to hear about the different issues...
 

niall

Senior Member
Messages
100
Location
Florida
Dr.Klimas does a very sophisticated test called a Cytokine Multiplex-18 Report. An immunologist should be able to order this test. The results of me test showed very elevated inflammation in various categories i.e. TNF-a, LTa. Some parts of this test will show anti-viral response too.
 

Sushi

Moderation Resource Albuquerque
Messages
19,933
Location
Albuquerque
Dr.Klimas does a very sophisticated test called a Cytokine Multiplex-18 Report. An immunologist should be able to order this test. The results of me test showed very elevated inflammation in various categories i.e. TNF-a, LTa. Some parts of this test will show anti-viral response too.

Several of the ME/CFS specialists use very sophisticated immune and inflammation testing. Mine does too. Another marker is your IL8. A lot of these more sophisticated tests are not likely to be paid for by insurance.

If they use the right tests, most of us show up with higher than normal inflammation patterns.

Best,
Sushi
 

niall

Senior Member
Messages
100
Location
Florida
Several of the ME/CFS specialists use very sophisticated immune and inflammation testing. Mine does too. Another marker is your IL8. A lot of these more sophisticated tests are not likely to be paid for by insurance.

If they use the right tests, most of us show up with higher than normal inflammation patterns.

Best,
Sushi
I looked up my IL8 level from the test completed on Dec. 12, 2012 and the level was 18.361 (pg/mL). The mean level for healthy people was 2.97 which means that I am above 90%. Anybody higher?
 
Messages
54
i think we cant find inflammation in our blood with markers like crp or wbc because the bugs (which i think most of us have) hide from being detected by our immune system. and as long as it does not find the bugs it cant stimulate inflammation.
 

Sushi

Moderation Resource Albuquerque
Messages
19,933
Location
Albuquerque
I looked up my IL8 level from the test completed on Dec. 12, 2012 and the level was 18.361 (pg/mL). The mean level for healthy people was 2.97 which means that I am above 90%. Anybody higher?

Your level is much lower than most for ME patients. Mine is much higher but then I am taking a treatment that is bound to increase inflammation in the short term. It is a side effect of immune activation, but ME patients often have higher than normal levels of inflammation anyway.

Sushi