• 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 (FM), 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.

Multiple cytokine tests, different results. Any thoughts?

maddietod

Senior Member
Messages
2,859
I'm so excited about Nevada! Maybe that will work out. Again, thanks for the feedback. I agree that this isn't a good time to go back to Florida.

heapsreal, the issue is......what if I don't have lyme? The abx will make hash of my candda (and gut in general), which I'll fix with the flagyl, and then I'll have no way of knowing if all that work did anything useful. Unless I'm lucky and I feel a lot better. Which has never happened in 28 years of treatments. It's all just another CFS Rubics cube.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I'm so excited about Nevada! Maybe that will work out. Again, thanks for the feedback. I agree that this isn't a good time to go back to Florida.

heapsreal, the issue is......what if I don't have lyme? The abx will make hash of my candda (and gut in general), which I'll fix with the flagyl, and then I'll have no way of knowing if all that work did anything useful. Unless I'm lucky and I feel a lot better. Which has never happened in 28 years of treatments. It's all just another CFS Rubics cube.

you know me, i think chuck everything at it and see what happens. SOmetimes the best way to diagnose something is to treat it and see if u improve??? I understand the candida is an issue.
i never did get that rubics cube out unless u taking it apart and putting it back together is included??
 

Nielk

Senior Member
Messages
6,970
Is Rey the only doctor testing for Cytokines in the US? My doctor is Enlander. I don't remember him ever testing for it.
 

patient.journey

Senior Member
Messages
443
SOC, did you find any useful links? I had this test done last September, and Dr. Rey never talked about my results. I just got a copy, and the brief story is:

TNFa normal, LTa very low, IL1a low, IL1b low, IL6 normal, TNF RI so high there's no reading.
IFNy low, IL12 very high at 12.53, IL2 normal, IL15 very low, IL8 and TNF RIso high there's no reading.
IL4 low, IL5 high, IL17 high, IL23 high, IL10 very low, IL13 normal.

I imagine I want the proinflammatory reading low, and the anti- ones high. Can you (anybody?) guide me to any links that will help me understand this?

I didn't get any treatment or ideas, other than that I had to get rid of Lyme, from Dr. Rey. I'm trying to decide whether or not to go back at the end of October.




Which lab are you using for cytokine testing ?
 

maddietod

Senior Member
Messages
2,859
you know me, i think chuck everything at it and see what happens. SOmetimes the best way to diagnose something is to treat it and see if u improve??? I understand the candida is an issue.
i never did get that rubics cube out unless u taking it apart and putting it back together is included??

I just saw my doctor, and he's all over the Lyme. My 1st results WERE equivocal, he's ordered a test kit that's similar to Infectolabs' test but he likes better. If those results are equivocal he's got some other plan.

I gave him the cytokine results and he copied them to do some research, so hopefully I'll get some information to share.