My reaction to IL-2-stimulating berries (and a B-cell theory)

[Ninan]

(I guess this could fall into the alternative therapies-cathegory, but since it's also about immune modulation I post it here. Move it if you want to.)

First: Did anyone else here have adverse effects from goji berries? 1-2 hour after taking a handful I start feeling really bad with CFS symptoms which I associate with the immune system: Sore armpits, sore throat, hot face, feeling feverish and like there is an elephant balancing on my chest. These symptoms go away (or return to their "normal" level, rather) after 3-4 hours.

(The first time I thought it must be a coincidence. So, being a dedicated empiricist, I tried again. And again. After four times, different days, with exactly the same results I was both convinced and fed up with feeling bad so I gave them to a non PWME-friend who ate them gladly and without any problems.)

I've been thinking back and forth about what might have happened and found these two facts:

First: A study on mice says that mice fed with goji berries "showed overall, significantly higher concanavalin A-induced IL-2 production (P < 0.05)." http://www.ncbi.nlm.nih.gov/pubmed/22739381

Second: IL-2 is (according to Dr Google) a "potent activator for B-cells and NK-cells."

And of course I jumped when reading B-cells, thinking of the rituximab trials.

My two questions:

1. Did anyone else have the same or a different reaction to goji berries?
2. Is it possible that my reaction was caused by IL-2 activating B-cells? Considering the time frame that process must be quite quick for that theory to hold up.

What say you? Any immune experts out there?

If this proved to be correct and a certain percentage of PWME:s react the same way I did then that might give us some clues to what the role of the B-cells are in ME/CFS and why rituximab helps.

 

[Seven7]

They are listed as strong immune modulators, I have been prescribed them and the start up reaction is the same. You have to start low and go slow.

I have known people that need immune boosters, others immune suppressants, is hard to tell what you should do but I think is a GREAT clue for you to follow up and get your immune profile done to see if modulators or booster or suppressants.... will be the most beneficial for you.

 

[Ninan]

They are listed as strong immune modulators, I have been prescribed them and the start up reaction is the same. You have to start low and go slow.

I have known people that need immune boosters, others immune suppressants, is hard to tell what you should do but I think is a GREAT clue for you to follow up and get your immune profile done to see if modulators or booster or suppressants.... will be the most beneficial for you.

Did they help you in any way? That you noticed?

I felt great for a month from the swine flu vaccine. Another clue. Though I'm not sure what that means either.

Are there any suppressants available that are not rituximab or methotrexate etc? Anything that's easier to get?

 

[Seven7]

@Ninan I am very stable at least not getting worse, I do have up and downs but I don't feel as sick (not sick at all unless I overdo) before treatment I felt horrible even at rest. Why would you do suppressants unless you are 100% that u have overactive immune system??? I think like RA people (that is what they gave my neighbor for her RA, not sure all RA is overactive).
I think one should really get an idea or you can end up in really bad shape.

 

[Ninan]

Still I've never heard if anyone getting permanently worse from supressants. And yes, I've looked. Not rituximab, not methotrexate, not enbrel. Adverse reactions are rare and if they do happen they go away when you quit the medicine. So there's really no proof for that.

 

[Seven7]

@Ninan There is actually a thread on RITUXimab that says the ones that got pain worse and worsen on it., Will look for link later, but you will hear of people in that thread that did not good on it.

I am more experimental with myself, If I am in a bad place I have no much to loose,then I try, If we go by others doing bad we wouldnt try anything since we all react differently. If I am stable I don't want to loose gains so I am more cautious. So good luck with your trial, I really hope you find whatever gives you some releive. Sometimes we just have to try stuff

 

[Ninan]

The norwegian study said some got worse with classic ME/CFS symptoms but I think they resolved alltogether when they quit.

People always say I must try stuff because I'm in bed all the time and gave nothing to lose. But I have a lot to lose, we all have. There seems to be no limit to how bad ME can get.

But still, as you say. Some things seem to be worth a try.