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    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.

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Antiretroviral Trial

Rrrr

Senior Member
Messages
1,591
so THAT is where you get the cytokine panel done, at WPI. do you know the cost?
 

Rrrr

Senior Member
Messages
1,591
just to compare

just to compare yr results, daffodil, with some from the WPI study that is not yet published, but much discussed, i'll post them below:

Treating cytokine up/down-regulation
______

WPI & NCI Paper

"Type 1 IFN Pathyway Response to Viral Infection in Chronic Fatigue Syndrome"

Mikovits,J. Hagen,K. Peterson,D. Stephens,R. Lombardi,V.
Whittemore Peterson Institute, Reno, NV, USA. Laboratory of Experimental Immunology, National Cancer Institute-Frederick, Frederick, MD, USA.

118 CFS patients
138 Controls

Cytokines/Chemokines:

CFS:

IL-8: 1045
MIP-1a: 763
MIP-1b: 1985
IL-6: 336
TNF-a: 148
IL-1b: 500
IP-10: 98
IFN-a: 35
IL-13: 28
IL-7 160

Controls:

IL-8: 13
MIP-1a: 91
MIP-1b: 164
IL-6: 29
TNF-a: 13
IL-1b: 56
IP-10: 32
IFN-a: 60
IL-13: 86
IL-7: 60

Guide to Chemokines/Cytokines:

IL-8: RNase L & CMV activated
MIP-1a: Elevated in neurodegenerative disease
MIP-1b: Elevated in neurodegenerative disease
IL-6: Stimulates chronic inflammation
TNF-a: Stimulates chronic inflammation
IL-1b: Stimulates chronic inflammation
IP-10: Interferon response protein
IFN-a:Stimulates macrophages and NK cells to elicit an anti viral response
IL-13: Inhibits inflammatory cytokine production
IL-7: Stimulates proliferation of B & T lymphocytes & NK cells

Summary and conclusions:

Cytokine and Chemokine profiling in combination with machine logic algorythms reveals an inflammatory signature consistent with an over-expression of herpes virus and is useful for diagnosis for CFS
________
 

Rrrr

Senior Member
Messages
1,591
VIP/WPI does this cytokine and chemokine panel for $400+
and medicare sometimes kicks in $100 (i just called VIP/WPI to ask them).
 

mojoey

Senior Member
Messages
1,213
Daffoil,

How puzzling that your rnase l went up but your elastase came down! What do you make of that?

As for the IL-8, Peterson also told me that's the one IL that has the most correlation with XMRV. I tested twice with VIP and both times that was the only one that was elevated (500+). Everyone other IL was normal
 

TheMoonIsBlue

Senior Member
Messages
442
Hi Daffodil :)

Very interesting about your IL-8 being so elevated. Thanks, mojoey, for sharing Dr. Peterson's view about IL-8 and XMRV (and it sounds like also activated herpes viruses by what someone else said) It sounds like you are very likely infected with XMRV, or some variant of MLV.

Have you considered maybe emailing Judy Mikovits and asking her views on this? I wonder if any HIV patients have elevated IL-8 and what happens during ARV treatment? Does your prescribing ID doctor know anything about cytokine testing...? I don't know if they study this in HIV patients or just watch their viral load. Sorry I think all I did was ask more questions when you were looking for answers!

Anyways, wishing all the best to you
 

Daffodil

Senior Member
Messages
5,875
thanks for the posts. i would have asked dr. mikovits but i think she is too busy so i have asked dr. lombardi and i am hoping he will respond.

joey....since the RNase L was 115 the last time, i think its just a negligible fluctuation.

i guess i thought that after several months on the meds, the cytokines would start to normalize..but the IL8 is through the roof. i have never tested it before.

i heard that dr. peterson uses cytokine panels early on in treatments to determine whether the treatment is working....wonder what he would think.

one thing that has really improved is the elastase....wonder what it means!

sue
xoxo
 

Daffodil

Senior Member
Messages
5,875
IL8 is produced by macrophages that are infected by HIV1...so i dont know if, over time, the XMRV-infected cells will be killed off...or if i need another med. ugh
 

Hope123

Senior Member
Messages
1,266
Klimas has IL-8 as a chemoattractant for immune cells, including NK cells and neutrophils.

I had 18 cytokine measurements through her lab and 13 of mine were elevated a lot; if the median was used as "normal", that number would rise to 15/18. Interestingly, my IL-8 is below normal and this is similar to what Klimas saw in her study of cytokines in women with CFS. Most of the cytokines she measures are different from those WPI measures. I don't know if this means there are different subtypes or if measuring techniques could contribute to cytokine differences (e.g. a longer time between blood draw and processing can elevate cytokines, some cytokines also vary levels throughout the day, etc.).

My speculation is that cytokine patterns are going to vary a lot even among people with XMRV because it might be affected by other pathogens and also by individual differences in immune systems. I've done a little reading about cytokine patterns in autoimmune diseases and so far, it seems like even for the same autoimmune disease, cytokine patterns might be different for different individuals. [But for these diseases, cytokine measurements are not used for diagnosis; other blood tests are. The cytokines are primarily for research purposes.]
 

Daffodil

Senior Member
Messages
5,875
thanks hope. my old doctor also thought cytokine testing wouldnt be a good idea because they vary so much....
 

Hope123

Senior Member
Messages
1,266
thanks hope. my old doctor also thought cytokine testing wouldnt be a good idea because they vary so much....

Daffodil, I don't think cytokines are great to pin down diagnosis but may help separate out groups of people who have no/ low cytokine signs of inflammation/ infection vs. those who do. For example, I understand that solely depression can cause some elevation in cytokines but I don't think they are to the level that people with an infection/ immune process involved might have. [still learning about this] So just separating out this group might help with research.

I do think though that tracking cytokine levels within an individual will help with assessing response to treatment. This is because of the old Kerr study which showed decreased cytokine levels to normal (from high) with CFS resolution for those with acute onset parvoB-19 CFS successfully treated with IVIG. This is one of the few true examples of treatment leading to recovery from CFS (not improvement but full recovery) I have seen well-documented.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
hi sue, its all looking good for u but along way to go i suppose, atleast your seeing some benfits, so it keeps that fight in the old dog going, lol. When u get your nk test back do u have plans on how your going to treat nk cell dysfunction. Im interested to see what u do and how u respond as im going down this route at the moment as this is another test i have had that was abnormal as well as my lymphocytes being elevated.

cheers!!!
 

mojoey

Senior Member
Messages
1,213
I'm also very interested in seeing your new NK cell count. That has easily been the most stubborn clinical marker of mine (I could practically graph them as a straight line down from my first to last test)
 

Daffodil

Senior Member
Messages
5,875
i am also interested in my NK cell count lol...i remember reading about this fellow who had a jump in his NK cell count at 5months on ampligen, even though he still felt ill.

the only biomarker that has improved so far, that i know of, is the elastase...i need more!