• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Non-Covid Vaccine Question

hapl808

Senior Member
Messages
2,136
Just going back through my records, and with some of the current questions about potential vaccine triggered ME/CFS, I was wondering something.

My onset was 25 years ago after getting sick in SE Asia. I always assumed some enterovirus or whatever. Vomiting and awful diarrhea, but once that cleared up I had constant GI problems, spastic colon, unrelenting fatigue, muscle weakness, etc. Those symptoms never resolved.

Recently got some of my old records from the ID doctor I saw before SE Asia to get my vaccines updated.

I received vaccinations eight days before getting sick in SE Asia. The vaccines I received were Hep A, Polio IPV, Typhoid.

Never really considered before that my illness could've been related to the vaccines, rather than in spite of them. I was quite careful in SE Asia (I was used to being in places where you brush your teeth with bottled water, etc). Just assumed I had some contaminated food, but now it makes me wonder a bit since that was the only time as an adult that I got vaccinated (never got any after that).

But looking at some of the clinical trials on vaccines that show diarrhea and vomiting as potential side effects, just makes me wonder. Not that it matters since I don't think it informs treatment.
 

hapl808

Senior Member
Messages
2,136
And the comment: "...the only polio vaccine used in the United States since 2000, carries no risk of VAPP." [underline mine]

You were vaccinated in 1997?

Yes, but records say it was the IPV vaccine, so supposedly no chance of infection from that. Only the oral vaccine comes with that risk.
 

Viala

Senior Member
Messages
640
It is possible that your immune system was still compromised after the vaccines and it was easier for you to catch anything. I don't think we can protect ourselves entirely while traveling to another climate countries, the cuisine and local microbiome is much different and all it takes is one drop of tap water on a plate. Have you tested yourself for that infection again?

These could be vaccine side effects as well, triggered by contaminated food and compromised microbiome, the immune system kicking in not entirely properly. When I was traveling I remember one guy from Europe who vaccinated himself with Hep before going to Asia and he was there on the way to the hospital because he had hepatitis.
 

Wishful

Senior Member
Messages
5,790
Location
Alberta
I think that's one of those "you may never know" questions. I had a tetanus booster not long before developing ME, so was that the trigger, or just a coincidence? Maybe vaccines can disturb the immune systems in a way that results in susceptibility to developing ME. I still think immune activation is the trigger for ME, but other factors may lay the conditions for the activation to push us into the ME state.
 

hapl808

Senior Member
Messages
2,136
Have you tested yourself for that infection again?

Wouldn't know how to test for the infection since no idea what (or if) it was at the time.

I think that's one of those "you may never know" questions.

Yeah, that's always my impression. And why I'm skeptical of various unvalidated tests that supposedly prove something or other. I guess more vague wondering more than any thought of finding out this long after the fact - and not sure it would change anything even if I did know.
 

Wishful

Senior Member
Messages
5,790
Location
Alberta
My guess is that vaccinations or viral infections are not "the" cause of ME; they're just one of many factors that combine to push us into that ME state. Maybe the vaccination was the final straw that caused something to snap. Maybe it wouldn't have snapped if you'd had a serving of fresh fruit or some green veggies, or not stayed up late playing video games. Maybe there's an age factor, and you might have delayed the onset for a few more months or years if you'd done something differently. Maybe you had done something that prevented it from occurring earlier.

Without a full understanding of ME's mechanism, knowledge of your personal trigger wouldn't help, because it wouldn't guarantee that the trigger would be a problem in the future. Another vaccination might help reduce ME symptoms. Vaccinations might trigger one person's ME, but help prevent ME in someone else.

What I want to know is how to switch my ME off (and keep it off).
 

GreenEdge

Senior Member
Messages
632
Location
Brisbane, Australia
Vaccines elicit an immune response.

IMHO Our immune system has priority access to nutrient resources and if someone already has a nutrient deficiency, it can push them over the edge.

I see these key nutrients as likely deficiencies in today's food culture:
  • Vitamins A, D, E & K2 from animal fats*. Plants only provide enough vitamin E.
  • Omega 3 EPA and DHA from animal fats*, not ALA from plants - very little of which can be converted into the form our bodies require (EPA and DHA).'
  • B vitamins from an animal based diet. Meat is an excellent source of B vitamins.`
*. Animal fats are high in saturated fat making them shelf-stable. Our taste buds are incredibly sensitive to rancid oils.
_ _ _ - highlighting the dangers of mono-unstable and poly-unstable fats in plant oils.
__In "Blue Zones", for good health pork fat is consumed. Oleic and palmitic acids are present in pork fat at 43 and 24% respectively.
'. ME/CFS is a disease of the brain and central nervous system..Both require EPA & DHA and fat soluble vitamins A, D, E & K2.
`-Anti-nutrients in plant based diets cause B vitamin deficiencies.
 
Last edited:

Forummember9922

Senior Member
Messages
170
I think if a vaccine leads to someone getting CFS its probably about a war between viruses for Turf. At least that is shown via a Prusty school of thought especially with herpesviruses. He showed this in an older lecture using 'Tom and Jerry' wrecking the house as a metaphor
 

Wishful

Senior Member
Messages
5,790
Location
Alberta
IMHO Our immune system has priority access to nutrient resources and if someone already has a nutrient deficiency, it can push them over the edge.
I think I had a reasonable diet before developing ME. Supplemental nutrients (including EPA & DHA) didn't make a difference for me after developing ME. I still think it's the chemical signalling from immune activation that triggers ME.

I think if a vaccine leads to someone getting CFS its probably about a war between viruses for Turf.
Tetanus is from a bacterial infection, so there's no reason for the vaccine to affect viral populations. Also, as I understand it, most viral infections don't cause noticeable symptoms; the chemicals released by the immune system reacting to the virus does.
 

Viala

Senior Member
Messages
640
Wouldn't know how to test for the infection since no idea what (or if) it was at the time.
There are a couple of typical infections that one can get in those countries, I am not sure though if it would be found in our western labs, something about differences in testing here and there. It can be a continuous low grade infection.

So many people are focused on viruses, but it may be as well some bacterial infection. If there is at least a slight chance that it can be behind all of this, it is worth to test for it if you have that possibility. It's what I've been thinking recently, that it all may go away with a right antibiotic.
 

hapl808

Senior Member
Messages
2,136
So many people are focused on viruses, but it may be as well some bacterial infection. If there is at least a slight chance that it can be behind all of this, it is worth to test for it if you have that possibility. It's what I've been thinking recently, that it all may go away with a right antibiotic.

I agree, but even the newer 'sequencing' type tests that seem to promise testing for thousands of bacteria or viruses seem more like scams than actual implemented technology.

I think back then there really was no way to test for more than a handful of things. As one doctor from that region told me, "We just treat because there are thousands of different pathogens." Interesting doctor who told me that - MD but also trained in Eastern medicine.

I do think it could be some fungus or bacteria or virus, but our diagnostic tools are surprisingly bad for the miracles of NGS. You'd think we could get a real test, but the disagreements about levels of IgG, IgM, PCR cycles, etc. I think Covid accelerated some of that research, but we still are far from the futuristic test that tells you what you're infected with. And they've seen that someone can have zero evidence of virus in their blood but it shows up in their liver or their brain, and so forth.

Sadly, I feel like it's the equivalent of being in 1940 and thinking the miracle of antibiotics will soon be followed by a similar antiviral and antifungal and all infectious diseases will be wiped out. Even there, 80 years later and it seems like C Diff responds better to FMT than all our miraculous antibiotics.

We really need some technological leaps not just in treatments, but also in imaging and diagnostic tools. I hope AI will speed that up with protein folding, ML analysis of imaging, etc.

My guess is that with the right dataset, AI could already accurately diagnose ME/CFS, and could also show us which features are the most important for that diagnosis.

Sadly, wonderful IRBs and HIPAA seem to stifle actual progress for all but the richest and most established institutions, meanwhile protecting their valuable data moats. Yet it never help us as patients since we regularly are required to sign away our lives to hospitals and have error riddled EHRs with information we didn't consent to including being seen by all manner of HCWs, admin, billing departments, insurance, and on and on.
 

Wishful

Senior Member
Messages
5,790
Location
Alberta
but we still are far from the futuristic test that tells you what you're infected with.
Our bodies are not completely microbe-free until we get an infection. How many benign--even helpful--viruses, bacteria and other microbes live inside (and on) us? At a wild guess, tens or hundreds of thousands of different DNA and RNA signatures. There are probably other microbes that cause serious symptoms for some people, but are relatively harmless in others. So, even if you had a super-duper transcriptome analyzer, listing all the RNA and DNA in your body, how is it supposed to know which one is actually causing a problem? You might have traces of EBV RNA, but so do most people, for whom it doesn't cause problems. That's without the problem of localized microbial populations, that might require taking samples of brain tissue from multiple points.
 

Wishful

Senior Member
Messages
5,790
Location
Alberta
So many people are focused on viruses, but it may be as well some bacterial infection.
It could also be something that doesn't involve infections, at least not directly. ME might be a state of our immune systems that can be triggered by immune activation, whether it's by virus, bacteria, autoimmune, or even simply tissue damage. If, for example, elevated IL-6 is the trigger, then it doesn't matter what the DNA or RNA is of the infectious agent or other cause of the immune system producing it.

I think temporary remissions are fairly strong evidence against ME being held in that state by an infectious agent. A dose of prednisone, T2, or cuminaldehyde shouldn't make an infection disappear within hours, then reappear some hours later. It's not impossible that those chemicals could temporarily block some pathway that the microbes use which results in ME symptoms, but it seems low probability to me.

Some people do claim remission (temporary?) from ME due to antiviral (or antibiotic?) treatments, but that might be due to reducing some chemokine (not specific to that microbe) that affects the severity of their ME symptoms, and if they got an infection from an unrelated microbe, they might get the same symptoms.
 

Wishful

Senior Member
Messages
5,790
Location
Alberta
I've worked it out.
Does that switch off your ME completely, or just reduce some symptoms a bit? ME can be switched off completely; I've had it do that multiple times, from several unrelated chemicals, but I wasn't able to keep it switched off.
 

hapl808

Senior Member
Messages
2,136
Our bodies are not completely microbe-free until we get an infection. How many benign--even helpful--viruses, bacteria and other microbes live inside (and on) us?

And therein lies the problem. We don't really understand how these pathogens work - only the broad strokes. So many things we don't know how to test for, or how to analyze the results, etc.
 

Viala

Senior Member
Messages
640
I think back then there really was no way to test for more than a handful of things. As one doctor from that region told me, "We just treat because there are thousands of different pathogens." Interesting doctor who told me that - MD but also trained in Eastern medicine.

I do think it could be some fungus or bacteria or virus, but our diagnostic tools are surprisingly bad for the miracles of NGS. You'd think we could get a real test, but the disagreements about levels of IgG, IgM, PCR cycles, etc. I think Covid accelerated some of that research, but we still are far from the futuristic test that tells you what you're infected with. And they've seen that someone can have zero evidence of virus in their blood but it shows up in their liver or their brain, and so forth.
That's where we stand with current testing, yet we still can test for some major pathogens and we have medicine that can solve the problem rather quickly. I guess it all comes down to 'what if'. What if it is one of these major pathogens, easily recognizable and easily treatable? I remember someone saying that it is good to be tested and treated in the country were the problem started, I keep thinking that maybe their diagnostics is better because they know these pathogens well.