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.
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. 
serafim
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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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Nord Wolf
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I went through a period of years without getting a single virus, infection, nothing. This was when the dysautonomia and M.E. was really amping up in my system. Everyone around me would come down with the normal colds, influenza, even covid, and I remained unaffected. It was strange, but since being ill is a thing I hate most in this world, I was happy not to be falling ill on top of all the other miseries of these chronic conditions.
Then last year rolled around and all that ended just like that. I started taking LDN in December or November of 2022. In February of 2023 I got sick for the first time in years... with H1N1. It hit me like a train and landed me in the ER after two weeks, supposedly a few hours before my organs would start shutting down due to the level of dehydration.
I quit the LDN last July since I hadn't noticed any difference from it at all.
Last October I contracted a cold, and again this past February, on the exact same day I contracted influenza the year prior.
Anyway, after years of dealing with dysautonomia and M.E., and not falling ill otherwise, it all seems to have ended as of February 2023. Not sure what that means, but the level of M.E. and dysautonomia has greatly worsened as of last year.
Then last year rolled around and all that ended just like that. I started taking LDN in December or November of 2022. In February of 2023 I got sick for the first time in years... with H1N1. It hit me like a train and landed me in the ER after two weeks, supposedly a few hours before my organs would start shutting down due to the level of dehydration.
I quit the LDN last July since I hadn't noticed any difference from it at all.
Last October I contracted a cold, and again this past February, on the exact same day I contracted influenza the year prior.
Anyway, after years of dealing with dysautonomia and M.E., and not falling ill otherwise, it all seems to have ended as of February 2023. Not sure what that means, but the level of M.E. and dysautonomia has greatly worsened as of last year.
Wayne
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Hey @Nord Wolf -- You may find the this video about curing H1N1 with Vitamin C therapy of interest. I'm a big believer in Vitamin C therapy, taking it by mouth, making a "Vit. C paste" for my skin, and adding it to the coffee enemas I do regularly.
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Wayne
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Hi @Garz -- I really enjoy reading your posts. They show an uncanny insight into what I think we're dealing with, even though it's usually difficult to pinpoint exact issues with each individual.
I once read an account of a super fit triathlete who started to become unusually fatigued during his workouts. It happened to coincide with having 3-4 amalgam fillings put in his mouth. So after a short while, he had those fillings removed; and lo and behold, his normal good energy returned.
Turns out he had about 16-18 other amalgam fillings, whose toxicity his body was able to handle. But it couldn't handle 22. We all have our tipping points, whether from amalgam or some other toxicity, or various kinds of chronic infections. He went on to remove the other 18 amalgams.
I believe modern medicine is literally in its infancy in understanding various kinds of infectious agents and their effects on the body (and mind, psyche, etc.). One Lyme researcher stated he believed there could be as many as 300 Lyme co-infections that have yet to be detected, much less understood.
As you say, if our immune systems were in good shape and we were in generally good health, these kinds of infections that pass our way and often stay embedded in our bodies wouldn't have any effect on us. But hit us with some type of trauma, and they can mobilize and become major issues in pretty short order. I think a lot of what people consider the normal aging process is just a gradual increase of various infectious agents in our body.
One thing I do to treat many of my symptoms (especially chronic headaches)--with a hope of staving off more health issues--is regular coffee enemas, which I believe are great for vagus nerve stimulation and detoxification. I also put various agents into the enema solution, such as goldenseal, iodine, Methylene Blue, MSM, niacin, etc.
One agent that seems to have had a great beneficial effect is adding 3-6 grams of sodium ascorbate. Definitely felt better energy and mental clarity as soon as I started. -- I finally got the idea to ask "Perplexity" (online AI program) if it could find any information on people putting Vitamin C in their enemas, and what kind of results they got. I was surprised to get the following reply:
The third search result 3 discusses a study in rats with ulcerative colitis, where a vitamin C solution enema was found to shorten the induction of remission by directly suppressing inflammation and promoting mucosal healing, compared to a 5-aminosalicylic acid enema.
If you click on the link, the full abstract has more information. Makes it sound like Vitamin C enemas would be good for most types of GI issues besides ulcerative colitis, such as IBS, Chron's, SIBO, etc. Here's a bit more from the abstract:
"...the VC group showed increased expression of type I collagen, which is expressed late in healing, and significant epithelial regeneration was observed in colon tissue.
This all falls in line with my belief that our medical system should have a primary focus of Vitamin C based interventions. A rural country doctor in the late 1940's proved conclusively that IV Vitamin C is literally 100% effective in curing polio. It was so effective, he began using it on all his patients for every malady imaginable.
The story goes that when patients would come to see him, he would immediately hook them up to IV Vitamin C, and they would improve right before his eyes while they began to tell him what was wrong with them. From my own extensive experience with using coffee, and now Vitamin C enemas, I've come to believe taking Vit. C enemas have an effectiveness somewhere between IV Vitamin C and taking it orally. That's a powerful tool to have easily available to us!
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Nord Wolf
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Thanks Wayne. I guess the trick is finding someone willing to give high dose vitamin C intravenously. Maybe your standard ER would, but I've never inquired. I know high dose Vit C through IV for various types of cancer has been around for a while. The Shen Clinic on the Isle of Wight I think was one of the first... over 15 years ago maybe.
But Vit C IVs for influenza might require a private clinic as opposed to main stream ERs. Did you ever come across an avenue for it?
Thank you very much for the kind words - it is appreciated
i am just someone who has been dealing with chronic illness for some years now - and it just dint feel right to me to resign myself to this situation as the new normal.
in my case - my fiancé and i became ill at the same time with almost exactly the same symptoms - so it was clear it was caused by something we were exposed to.
after spending some years trying to get diagnosis and treatment through NHS doctors and finding they were completely in the dark and, worse, lacked even a basic curiosity about what could stop a fit healthy person in their prime of life when all tests were "normal",
it become clear i would have to figure this out for myself -
its not a subject i had any experience in - and the number of field it touches is very broad indeed - so its been a steep learning curve
i am far from having all the answers - but i would like others to benefit from what i think i have learned so far - so that's why i post here from time to time.
my current progress is very encouraging - enough to know i am on the right track - but also not as fast as i would like - so my current area of focus is on potential blocking factors.
co-morbidities or other factors- that - even though you are doing everything else right - may inhibit the recovery process or at least slow it down - most likely by some effect on the host immune response.
i found your vitamin c enema info interesting - the vagus nerve is on my radar- at least as a way of helping the immune system function better -
you may find the following video interesting - much along the lines of the model discussed above - Dr Bill Rawls discusses Dormant microbes in the condition known as Chronic Lyme disease.
he talks about recent research that shows even our blood and internal organs have a microbiome and contains many different dormant microbes which are extremely hard to eradicate as they are in such a low metabolic state they are not taking things in from the environment - like antibiotics. he theorises that its is a loss of immune competence that allows this community to get out of control and keep people sick.
gbells
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Saying never sick isn't a good way to describe what is happening. A better way would be to say patients with myalgic encephalomyelopathy have fragmented mitochondria due to superinfections with chronic viruses like Epstein Barr virus and Herpes Simplex 6/7 virus. This problem reduces their ability to maintain body temperature and impairs their ability to mount a fever response during new infection.
ME patients often recall muscle twitches which is the body using apoptosis in a futile attempt to fight off the virus(es). After the viruses superinfect patients will notice the lowered energy production as colder skin than normal.
I have been able to restore my body temperature to normal by lowering the viral load through apoptosis induction. Even so, my ability to mount a fever is still inhibited.
ME patients often recall muscle twitches which is the body using apoptosis in a futile attempt to fight off the virus(es). After the viruses superinfect patients will notice the lowered energy production as colder skin than normal.
I have been able to restore my body temperature to normal by lowering the viral load through apoptosis induction. Even so, my ability to mount a fever is still inhibited.
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did you do pH testing with that? i am asking not because i think you made a mistake but because i made one. i drink a large glass of sodium ascorbate every morning and i only mixed it by taste. after developing what appears to be SIBO i tested the solution and it turns out it was too alkaline (pH 8-9) so i basically was neutralizing my stomach acid every morning (which apparently can lead to SIBO). but i am not asking this because of SIBO as none of it would reach the small intestine anyways.
idk what the safe pH range would be for an enema but avoiding anything too far from a pH 7 seems like a good idea.
i found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10518632/pdf/main.pdf where everything above the colon is in the pH 6-7.4 range so it feels safe to assume the rest doesn't deviate much from that either.
Dysfunkion
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I can't get a fever myself either, I can get a flu-y feeling but the burning in my head I feel isn't a fever in a typical sense whatever it is when I start to get into danger territory. It's independent of the flu like thing that happens but can often occur with it. I'm noticing lately I have an umbrella of trigger symptoms that can trigger in different patterns through different means with mental stimuli.
Florida Guy
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In the past 40 some odd years, might be longer than that, I have not come down with a single cold and only once with the flu in '19 which was likely covid. I recall a day or two that I felt not so great and might sniffle a little but went on with work and didn't get sick. I figured it was because I took many vitamins and other supplements.
If you don't get sick it doesn't mean your immune system is not working. If it wasn't working properly you would get very sick or die because diseases don't go away on their own. You either throw it off by yourself or an antibiotic does the job. Never getting sick means its working fine, maybe working too hard but definitely working
Could it be that there is a state like pre-ME in which the person has a few of the symptoms but not all of them? Then they either get better or gradually get worse until the onset of pem and everything else? I read people's accounts where they gradually came down with it over a period of years although most say it was a sudden thing after an illness. Maybe the illness was the trigger and they went from pre-ME to full on me/cfs? Did anyone have some symptoms before the actual onset?
Before I had my trigger, I had sinus issues for a long time, bad sleep for a long time, and some brain fog though I attributed that to chemo although it should have gone away. Also I had a time after a couple weeks of exertion and little sleep in which I felt exhausted for over a week which seems like a long time. The more clues we discover the closer we get to the answer
If you don't get sick it doesn't mean your immune system is not working. If it wasn't working properly you would get very sick or die because diseases don't go away on their own. You either throw it off by yourself or an antibiotic does the job. Never getting sick means its working fine, maybe working too hard but definitely working
Could it be that there is a state like pre-ME in which the person has a few of the symptoms but not all of them? Then they either get better or gradually get worse until the onset of pem and everything else? I read people's accounts where they gradually came down with it over a period of years although most say it was a sudden thing after an illness. Maybe the illness was the trigger and they went from pre-ME to full on me/cfs? Did anyone have some symptoms before the actual onset?
Before I had my trigger, I had sinus issues for a long time, bad sleep for a long time, and some brain fog though I attributed that to chemo although it should have gone away. Also I had a time after a couple weeks of exertion and little sleep in which I felt exhausted for over a week which seems like a long time. The more clues we discover the closer we get to the answer
Wayne
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Hi @bad1080 -- Thanks for bringing this to my attention. I'd not consciously considered whether putting sodium ascorbate in a coffee enema solution might change its pH. I'd been under the impression (not sure how I got it) that it was pretty neutral. I just did a query on Perplexity (AI website) about this which essentially confirmed it.
You bringing this to my attention makes me realize I should consider this as I continue to experiment with various kinds of things to put into the coffee solution. I just started putting in some probiotics (tip from a website called enemabag.com), and will likely experiment endlessly as I try to get my GI tract into as good a shape as possible.
I suspect gut microbiome issues are causative or majorly contributive in many cases of ME/CFS (which I'm trying to address with my therapeutic regimen). THIS video has some interesting perspectives on the many things that can disrupt our microbiome, and for me, even more potential insights into the connection between it and ME/CFS.
Below is the Perplexity query question and answer on pH. -- Thanks again for bringing this up for me to consider!
...............................................
Question: "would putting sodium ascorbate or ascorbic acid into water change its pH?"
Answer
Sodium ascorbate is pH neutral and generally will not significantly change the pH of water. One study specifically noted that "The addition of sodium ascorbate (up to 50 mg/L) did not significantly change the pH of tap water".
Ascorbic acid is mildly acidic and can lower the pH of water, especially in large doses or in water with low alkalinity. As one source states, "Since ascorbic acid is weakly acidic, the pH of the treated water may decrease slightly in low alkaline waters".
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JES
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Exactly. People with certain immune deficiencies like IgG deficiency get sick all the time. ME/CFS is not like that. It is actually one argument that could be made against chronic infections being the cause, at least for those of us who never get ill.
I actually got sick with most likely COVID recently after being unable to catch any virus for eight years despite being next to people that were ill. After being ill for two days, my ME/CFS symptoms improved on the third day compared to baseline, so I was able to get more things done than on a normal day while still recovering.
I sometimes wonder if going through a particularly tough cold or flu could unreset this ME/CFS condition and return the immune system back to normal permanently.
i guess that is true if you buy it like that, not so much when you make your own (and don't do the math and measuring or test it afterwards like i did)