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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Sick but never sick

W

Wishful

Senior Member
Messages
5,741
Location
Alberta
The ingredient that caught my attention is elderberry. That seriously increases my symptom severity. Whenever I find a multi-ingredient product that affects me, I try the ingredients separately to find out which is the active one. If elderberries are the useful ingredient for you, you can probably find a cheaper source, and one with fewer potential side-effects.
 
serafim

serafim

Messages
85
Tammy said:
Not getting the flu or colds is not necessarily a good sign that your immune system is working........in fact it can be a sign that it isn't working properly which I know goes against normal deduction of reasoning. There are a group of people with me/cfs that also don't get colds or flu. I'm one of them. My immunologist/cfs specialist told me that when I start getting colds again or the flu that it would actually be a good sign for me. I don't know the physiology behind this. I have had maybe 3 colds in the last 19 years and maybe one or two bouts of the flu. The times that I have had a cold.......my cfs symptoms felt better overall. Weird I know!
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same! i do get colds but they’re always very minor. i also don’t think it’s a sign of good immune function. recently i caught a virus, and it was the first time since 2019 when i had a full blown immune response, fever and all. and compared to how i was before, i feel fantastic. still severe but not very severe. dreading the potential relapse.

this makes me think, does that mean treatments and supplements that activate the immune system could be beneficial? i used to think i should avoid them bc of potential autoimmunity involved in CFS. do you have any experience with treatments like that? i’m thinking i should try the staph vaccine if i can get my hands on it.
 
Tammy

Tammy

Senior Member
Messages
2,186
Location
New Mexico
serafim said:
this makes me think, does that mean treatments and supplements that activate the immune system could be beneficial? i used to think i should avoid them bc of potential autoimmunity involved in CFS. do you have any experience with treatments like that? i’m thinking i should try the staph vaccine if i can get my hands on it.
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Not sure by what you mean by treatments that activate the immune system? Maybe you could give an example. I take a number of supplements that support the immune system. Mostly herbal anti-virals, B12, Zinc, C to name a few. I'm not a proponent of autoimmunity theory as I don't think that our own body attacks itself. I do believe though that our immune system attacks pathogens. Personally, I don't feel comfortable with vaccines. Do you know how the whole staph vaccine for CFS got started and what is the explanation for why it could help?
 
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