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.
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Sick but never sick
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JaimeS
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As per above, @Wishful , I only take it in small quantities when I need to boost immune function. Otherwise I don't touch it at all. 
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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
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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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Never getting ill Here either. First time i cought a Cold was 3 days after a thymosin alpha 1 injection. I Had horrible Side effects so i am afraid to do it again but yeah. I will at some Point.
Anyone in the never getting ill hive mind tried astralagus?
Never getting ill Here either. First time i cought a Cold was 3 days after a thymosin alpha 1 injection. I Had horrible Side effects so i am afraid to do it again but yeah. I will at some Point.
Anyone in the never getting ill hive mind tried astralagus?
never getting colds or flu - even when surrounded by people who have them - is common in people with chronic Lyme -
i didn't get a single one for the first 5 years i was ill with Lyme and bartonellosis - and only started getting them again when i was past 50% recovered
around 30% of chronic lyme patients also develop hashimotos thyroiditis - so that's another potential indicator - i developed that also
unfortunately this is not an indication that the immune system is working well - but is instead dysregulated - it just happens to be dysregulated in such a way as the normal response to viral infections is not taking place.
remember - the immune system is not a single scale like its made out to be on TV adverts and the backs of supplement bottles -as it it were like your hi-fi volume knob and you can simply turn it up or turn it down - at will - instead its a very complex and sophisticated system with maybe 50 different cytokines and chemokines - 30 different cells types and additional neuroendocrine elements also.
some are pro-inflammatory - some are anti-inflammatory - some are regulatory - and all are supposed to work together in a complex interconnected dance in response to your changing environment.
any spanner in the works will stop it doing what its supposed to do - cause it to over react in some places and under react in others - of just get stuck in one mode rather than following its usual cycle.
i didn't get a single one for the first 5 years i was ill with Lyme and bartonellosis - and only started getting them again when i was past 50% recovered
around 30% of chronic lyme patients also develop hashimotos thyroiditis - so that's another potential indicator - i developed that also
unfortunately this is not an indication that the immune system is working well - but is instead dysregulated - it just happens to be dysregulated in such a way as the normal response to viral infections is not taking place.
remember - the immune system is not a single scale like its made out to be on TV adverts and the backs of supplement bottles -as it it were like your hi-fi volume knob and you can simply turn it up or turn it down - at will - instead its a very complex and sophisticated system with maybe 50 different cytokines and chemokines - 30 different cells types and additional neuroendocrine elements also.
some are pro-inflammatory - some are anti-inflammatory - some are regulatory - and all are supposed to work together in a complex interconnected dance in response to your changing environment.
any spanner in the works will stop it doing what its supposed to do - cause it to over react in some places and under react in others - of just get stuck in one mode rather than following its usual cycle.
while of course i do treat and try to approach my suspected infections, garzie i still doubt its my ONLY problem.
maybe i am naive but i just cant wrap my head around the idea that bartonella is the only thing wrong in my body. they found it in the smear so its most likely there and i of course do not ignore that.
i treat with herbs mainly at the moment. but i have a Rx of rifampin and minocycline here. if i improve on that its cristal clear i would say.
My current idea after apheresis is to go with: lactoferrin, ku shen, taxifolin and cryptolepis.
maybe i am naive but i just cant wrap my head around the idea that bartonella is the only thing wrong in my body. they found it in the smear so its most likely there and i of course do not ignore that.
i treat with herbs mainly at the moment. but i have a Rx of rifampin and minocycline here. if i improve on that its cristal clear i would say.
My current idea after apheresis is to go with: lactoferrin, ku shen, taxifolin and cryptolepis.
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its never the only problem in my opinion Blazer
firstly, once you have a chronic infection - it ALWAYS causes a cascade of other problems downstream - things like inflammation related issues, immune dysregulation, auto-immunity, neuropathy, gut issues, mood / mental health issues - and many more ..... its a long list - and they tend to be different in each individual due to the host response phenomenon - making a simple cause and effect analysis difficult as the end symptoms are so different - even when the cause is the same
but also - most of the time it likely wasn't the only problem to begin with - typically these pathogens do not make fully healthy resilient people sick - their immune systems deal with them - just as they are designed to - and like they do for the vast majority of pathogens we encounter in our environment.
for us to become sick with one of these chronic infections - something had to be at work already to lower our defences. so there was something upstream in the disease process to consider also.
chronic stress, chronic lack of sleep, are major immunosuppressive stressors - as is phycological trauma, physical trauma, or a major surgery - or just having acquired one too many pathogens over time that your body hadn't dealt with prior to exposure to the most recent chronic pathogen.
getting a acute viral infection is another such example- studies show its a major immunosuppressive event.
with defences dysregulated or down regulated by these stressors - chronic infections can become established
once established they have many mechanisms to avoid immune detection and clearance and keep the host sick - as that's what they have evolved to do over millennia. they wouldn't be around today if they had not evolved this trait - as the intervals between transmission events are too long for effective transmission if they cannot survive in their host long term. killing the host doesn't work - but being killed by the host defences doesn't work either - so they have evolved a way to sit in the middle ground.
again - because the actual root causes can be so far back in time - and may not have symptoms at that time or at least no symptoms we directly attributable to the current state - it makes the unpicking of the puzzle rather challenging - but i believe this is the correct frame work to use to try to understand it.
good luck with the treatment trials
as a reference point - be aware clear signals over a month of so of abx are often a rare event in the chronically ill - especially with chronic bartonellosis.
in my case i am making measurable progress - but its in the order of a couple of percentage points per month -and that's on combination antibiotics, plus all buhner's herbs, plus biofilm agents. You need quite sophisticated objective methods to even detect such a small change -
firstly, once you have a chronic infection - it ALWAYS causes a cascade of other problems downstream - things like inflammation related issues, immune dysregulation, auto-immunity, neuropathy, gut issues, mood / mental health issues - and many more ..... its a long list - and they tend to be different in each individual due to the host response phenomenon - making a simple cause and effect analysis difficult as the end symptoms are so different - even when the cause is the same
but also - most of the time it likely wasn't the only problem to begin with - typically these pathogens do not make fully healthy resilient people sick - their immune systems deal with them - just as they are designed to - and like they do for the vast majority of pathogens we encounter in our environment.
for us to become sick with one of these chronic infections - something had to be at work already to lower our defences. so there was something upstream in the disease process to consider also.
chronic stress, chronic lack of sleep, are major immunosuppressive stressors - as is phycological trauma, physical trauma, or a major surgery - or just having acquired one too many pathogens over time that your body hadn't dealt with prior to exposure to the most recent chronic pathogen.
getting a acute viral infection is another such example- studies show its a major immunosuppressive event.
with defences dysregulated or down regulated by these stressors - chronic infections can become established
once established they have many mechanisms to avoid immune detection and clearance and keep the host sick - as that's what they have evolved to do over millennia. they wouldn't be around today if they had not evolved this trait - as the intervals between transmission events are too long for effective transmission if they cannot survive in their host long term. killing the host doesn't work - but being killed by the host defences doesn't work either - so they have evolved a way to sit in the middle ground.
again - because the actual root causes can be so far back in time - and may not have symptoms at that time or at least no symptoms we directly attributable to the current state - it makes the unpicking of the puzzle rather challenging - but i believe this is the correct frame work to use to try to understand it.
good luck with the treatment trials
as a reference point - be aware clear signals over a month of so of abx are often a rare event in the chronically ill - especially with chronic bartonellosis.
in my case i am making measurable progress - but its in the order of a couple of percentage points per month -and that's on combination antibiotics, plus all buhner's herbs, plus biofilm agents. You need quite sophisticated objective methods to even detect such a small change -
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