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Which cytokines to test for?

svetoslav80

Senior Member
Messages
700
Location
Bulgaria
I finally have some money and on my next crash, I'm going to make a cytokine pantel test. I hope I find a proper laboratory for this in my city. But I need an advice. Which cytokines to test for? Which cytokines are typical for fatigue. I think IL1, IL-2, TNF-alpha (maybe), and I've heard that IL-10 is typically in big quantities when one has hangover, a symptom which is the worst for me. I'm going to pay for the test by myself so I can't allow too big number of cytokines. Maybe about 5. Any suggestions?
 

SOC

Senior Member
Messages
7,849
I can tell you which ones Drs Klimas and Rey routinely test, if you want to know.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I finally have some money and on my next crash, I'm going to make a cytokine pantel test. I hope I find a proper laboratory for this in my city. But I need an advice. Which cytokines to test for? Which cytokines are typical for fatigue. I think IL1, IL-2, TNF-alpha (maybe), and I've heard that IL-10 is typically in big quantities when one has hangover, a symptom which is the worst for me. I'm going to pay for the test by myself so I can't allow too big number of cytokines. Maybe about 5. Any suggestions?

Do you have a basic pro-inflammatory cytokine test available? That might give you some of the basics though most of the specialists do test for more than that.

The other question is do you or a doctor you work with know how to translate cytokine results into treatment? Or would it be more for diagnostic information?

Sush
 

svetoslav80

Senior Member
Messages
700
Location
Bulgaria
Do you have a basic pro-inflammatory cytokine test available? That might give you some of the basics though most of the specialists do test for more than that.

The other question is do you or a doctor you work with know how to translate cytokine results into treatment? Or would it be more for diagnostic information?

Sush
Hi Sushi,
I don't work with a doctor, I decided to make the test by myself. It will be just for diagnostic information. I'm not a typical CFS patient. I know that for CFS, most cytokine levels are normal. But in my case, I hope there will be some findings. What means If I have a basic pro-inflammatory cytokine test available? Is it a test that I buy and do by myself? If so, no I don't have one. I'm also not sure If I can find one here in pharmacies.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi Sushi,
I don't work with a doctor, I decided to make the test by myself. It will be just for diagnostic information. I'm not a typical CFS patient. I know that for CFS, most cytokine levels are normal. But in my case, I hope there will be some findings. What means If I have a basic pro-inflammatory cytokine test available? Is it a test that I buy and do by myself? If so, no I don't have one. I'm also not sure If I can find one here in pharmacies.

Some labs offer a pro-inflammatory cytokine panel. Panels may be less expensive than requesting individual cytokine tests. In the US you would get a kit from the lab, go directly to the lab with a lab requisition, or to a doctor who would send your blood to the lab.

It works differently in each country I would guess. I got a kit from a lab (a doctor had to sign the requisition), got my blood drawn at a hospital, and sent the kit to the lab.

Sushi
 

SOC

Senior Member
Messages
7,849
I know that for CFS, most cytokine levels are normal. But in my case, I hope there will be some findings.
My cytokines sure as hell are not normal, and neither are my daughter's. I suppose it depends on what cytokines you're looking at.
 

Seven7

Seven
Messages
3,444
Location
USA
Be aware, Mine are different every time. Some are consistent every time. But Mine are all over the place, specially the inflammatory ones, and you need to know how to interpret the whole picture.

Also just a thought, you can pay very little for a phone consultation w some CFS Dr like Enlander to give you some list or guidance to start.
 

svetoslav80

Senior Member
Messages
700
Location
Bulgaria
Proinflammatory Group
TNF-alpha
LT-alpha (TNF-beta)
IL1 alpha
IL1 beta
IL6
TNF RI

Th1/IL-8 Group
IFN-gamma
IL12
IL2
IL15
IL8
TNF RII

Th2/Th17/Anti-inflammatory Group
IL4
IL5
IL17
IL23
IL10
IL13

This is very useful, thank you.
 

SOC

Senior Member
Messages
7,849
Be aware, Mine are different every time. Some are consistent every time. But Mine are all over the place, specially the inflammatory ones, and you need to know how to interpret the whole picture.

Also just a thought, you can pay very little for a phone consultation w some CFS Dr like Enlander to give you some list or guidance to start.
Same here. I have some that stay consistently normal, one that's consistently high, some consistently low, and others that change dramatically from one visit to the next. It may have something to do with what meds or supplements I'm taking, or it may have nothing to do with anything I'm doing.

It might take an immunologist (or an experienced doc like Dr Enlander) to interpret the results.
 

svetoslav80

Senior Member
Messages
700
Location
Bulgaria
After calling every single immunology lab in Bulgaria, including the biggest ones in the capital, it turns out that in my country there's only one lab that makes cytokine tests, but unfortunately not the ones I want to test for - interleukin 10, interleukin 12 and interferon gamma. The lab doctor was kind and asked me about my symptoms, but I gave her only a brief description because I didn't want to loose her time on the phone with my full medical history. Unfortunately she told me that she thinks these tests were not suitable for me, because these cytokines could be "influenced by many other factors". I'm kind of disappointed now because I thought I was on the right way. Besides I see that some people with similar symptoms do test for cytokines. At the end she told me that if I still want to make these tests, I'd better look for a "scientific laboratory" rather than immunology. But I couldn't find such a lab neither. Are these cytokine test so hard to perform ...
 

svetoslav80

Senior Member
Messages
700
Location
Bulgaria
Some questions for professor @Jonathan Edwards
First my medical history in brief:
I'm a former alcoholic. Over time, I developed unexplained groin and esophageal pain, and my digestive system has become hypersensitive to both irritating foods and physical motion (if my stomach is empty for a long time, a single sneeze or hiccup can trigger the symptoms and they continue at least 3 weeks). More important besides the pain I experience brain fog and fatigue but not muscle fatigue and more like a hangover type fatigue. I just feel sick and it's very hard to concentrate. Recently I've started to experience post exertional malaise as well. As my primary symptom is hangover type brain fog and fatigue , I researched and learned that IL-10 IL-12 and IFN-gamma are elevated when someone has hangover. I was wondering if I have these cytokines elevated, in times when I'm sick. A doctor has advised me that these tests were not suitable for me because these cytokines were influenced by many different factors. But I'm not sure how competent she was. So I need your opinion. It turns out that it's very hard to make these tests, eventually I will need to have my blood drawn and send it to another country. But I'm asking in principle, even if I had a lab near me, is it worth making these tests in my case? Can these cytokines be elevated in a healthy person? Are the tests reliable?

p.s. I had my spleen removed due to trauma if that matters.
 
Last edited:

Jonathan Edwards

"Gibberish"
Messages
5,256
Some questions for professor @Jonathan Edwards
First my medical history in brief:
I'm a former alcoholic. Over time, I developed unexplained groin and esophageal pain, and my digestive system has become hypersensitive to both irritating foods and physical motion (if my stomach is empty for a long time, a single sneeze or hickup can trigger the symptoms and they continue at least 3 weeks). More important besides the pain I experience brain fog and fatigue but not muscle fatigue and more like a hangover type fatigue. I just feel sick and it's very hard to concentrate. Also I recently started to experience post exertional malaise. As my primary symptom is hangover type brain fog and fatigue , I researched and learned that IL-10 IL-12 and IFN-gamma are elevated when someone has hangover. I was wondering if I have these cytokines elevated, in times when I'm sick. A doctor has adviced me that these tests are not suitable for me because these cytokines were influenced by many different factors. but I'm not sure how competent she was. So I need your opinion. It turns out that it's very hard to make these tests, eventually I will need to have my blood drawn and send it to another country. But I'm asking in principle, even if I have a lab near me, is it worth making these tests in my case? Can these cytokines be elevated in a healthy person? Are the tests reliable?

p.s. I had my spleen removed due to trauma if that matters.

Although I was an immunologist I never used a cytokine test to make a decision on a patient and as far as I know in the rheumatic disease field nobody uses cytokines still. I don't think they give you useful information as a rule. If cytokines are operating in the body and having an effect it is generally much easier to test for the effect. From what I have seen on PR there seem to be lots of private labs doing cytokine tests but I am not impressed that they are reliable or useful.
 

JAH

Senior Member
Messages
497
Location
Northern California
Even Dr. Montoya, who published on cytokines, doesn't test for them. Expensive, and results don't change his approach. He assumes if you have CFS, cytokines profile will be abnormal.