Different Perspectives on Fibro

[sweetkamie20]

Hello, we can't send you private messages yet. You have to get enough likes or comments or something so I'm just going to start liking all of your stuff if you put little brief comments frequently it moves pretty fast...

 

[sweetkamie20]

How old are you now? Which part of the world are you in?

Almost 44. US. Florida to be exact.

Yes what you mention for you is very common. I would say 99% of fibro is caused from an invading pathogen coming into the body. Once it gets in in most cases it hijacks into your HPA axis (hormones, temperature regulation etc) and turns the heat up in your body among other things so it can thrive better.

Crazy thing is I NEVER have a temperature! I feel like I'm burning up, I'm sweating profusely, etc but no temp ever.

They also create biofilms which essentially are bacteria covered in snot which then hardens into a crust. This acts as a fortress for them where the normal macrophages in our body can't attack them. They stay here and then proliferate until they get to a high enough number where they then move out of the fortress and are ready to start attacking the rest of the immune system and take it over even more.

Oooo could this explain why my 4 hour quarterly flares turned into brutal extended ones?

Clearing out these pathogens by rebalancing the microbiome is the most important thing in the majority of fibro cases in my experience.

Plenty of more info to read, but I'm aware of the rules of this website and don't want to advertise. Feel free to message me though and I can always see if I could help a little bit more about your condition etc..

Hoping to get to message you soon

 

[JayCS]

I NEVER have a temperature!

I do... ... +1-1.5°C after the CoV-jabs. . It then comes up to others' normal... At least axillary.
Orally it's closer to normal, my practitioner asked for that, making me realize what a difference that makes.
Did I read recently that people with fibro often have a colder base temperature? I think so.

 

[sweetkamie20]

YES!!!!!!!!!!!!!!!!!! I'm always at least a degree lower!!!! I didn't ever hear about this.

 

[sunkacola]

I would say 99% of fibro is caused from an invading pathogen coming into the body.

I just want to say in response to this that this is an opinion, not a fact. No problem whatever with having, and expressing, opinions on fibro and its causes on this forum, but there is no scientific proof that an invading pathogen is the cause of fibromyalgia.

I say this because many people read this forum, and I want to be sure that the best possible information is seen on this forum. So far, there is no consensus in the scientific or medical communities as to the cause(s) of fibromyalgia, or for that matter much of anything else about it, although there are many theories.

 

[Auriel]

Welcome to the forum fibro849 ️, changing diet also made a difference to me, Thank you for sharing what helped (it's always good to know the different things that helped fellow/former fibro sufferes)

 

[fibro849]

I just want to say in response to this that this is an opinion, not a fact. No problem whatever with having, and expressing, opinions on fibro and its causes on this forum, but there is no scientific proof that an invading pathogen is the cause of fibromyalgia.

I say this because many people read this forum, and I want to be sure that the best possible information is seen on this forum. So far, there is no consensus in the scientific or medical communities as to the cause(s) of fibromyalgia, or for that matter much of anything else about it, although there are many theories.

Fair enough.

 

[fibro849]

YES!!!!!!!!!!!!!!!!!! I'm always at least a degree lower!!!! I didn't ever hear about this.

Yes most pathogens like cool temperatures, so to thrive more they hijack your HPA axis and lower the temperature on your body. Burning sensation usually coming from overactive inflammation.

 

[JayCS]

I would say 99% of fibro is caused from an invading pathogen coming into the body.

there is no scientific proof that an invading pathogen is the cause of fibromyalgia

I guess you then see the mainstream cause attributions like CSS as effects of that, not really the cause?
And how do you detect these pathogens, I assume not by proven analytical methods?
Could you give examples of pathogens you mean?

They also create biofilms which essentially are bacteria covered in snot which then hardens into a crust. This acts as a fortress for them where the normal macrophages in our body can't attack them. They stay here and then proliferate until they get to a high enough number where they then move out of the fortress and are ready to start attacking the rest of the immune system and take it over even more.

Is this more than just a chain of guesses? - First the pathogens, then them being biofilmed as Trojan horses, then fibro as - primarily - an immune system disease? I've got no problems with trying alternative treatments, but I still believe it's safer to know more that we "don't know", rather than making guesses or chains of guesses. (I know even scientists like making chains of guesses, cos it makes for a nice story.... But when you then multiply probabilities you get to approach 0% probability. If each of these 3 links in the chain have a probability of 20%, which I think is high considering there is no proof, then 20% of 20% of 20% is less than 1% probability for it to be right...)

Clearing out these pathogens by rebalancing the microbiome is the most important thing in the majority of fibro cases in my experience.

Back to the leaky gut hypothesis? Probiotics (and prebiotics), bitter impulses, that kind of thing...?

(I remember taking Symbioflor 1 for 7 months according to the protocol of naturopathic internistic doctor without the least gut improvement 25 years ago and him saying: well, then you'll have to take it for a year. Instead I started an elimination diet and got considerable improvements inside of weeks. Knowing and eliminating all my many triggers makes my gut appear healthy now, without any meds for it, but of course that's far from a perfect solution: difficult and can cause deficiencies. But I can't imagine these hypotheses working for me any more.)

 

[fibro849]

I guess you then see the mainstream cause attributions like CSS as effects of that, not really the cause?
And how do you detect these pathogens, I assume not by proven analytical methods?
Could you give examples of pathogens you mean?

Is this more than just a chain of guesses? - First the pathogens, then them being biofilmed as Trojan horses, then fibro as - primarily - an immune system disease? I've got no problems with trying alternative treatments, but I still believe it's safer to know more that we "don't know", rather than making guesses or chains of guesses. (I know even scientists like making chains of guesses, cos it makes for a nice story.... But when you then multiply probabilities you get to approach 0% probability. If each of these 3 links in the chain have a probability of 20%, which I think is high considering there is no proof, then 20% of 20% of 20% is less than 1% probability for it to be right...)

Back to the leaky gut hypothesis? Probiotics (and prebiotics), bitter impulses, that kind of thing...?

All fair enough. As I mentioned there is no one cause for fibro as in TCM alone there at least 8 main causes/types.

I give these examples as possible scenarios of what be going on given the limited info I have.

What I say comes from my clinical experience mainly. As for journal articles on some of these facts there are in fact many, apparently I can't message yet but I will be able to soon? In this case if you want I can send these links to you?

Sure I can be more careful how I word things..

 

[fibro849]

All fair enough. As I mentioned there is no one cause for fibro as in TCM alone there at least 8 main causes/types.

I give these examples as possible scenarios of what be going on given the limited info I have.

What I say comes from my clinical experience mainly. As for journal articles on some of these facts there are in fact many, apparently I can't message yet but I will be able to soon? In this case if you want I can send these links to you?

Sure I can be more careful how I word things..

In the case of pathogens may have initially caused the condition, in regards to detection, this is the realm of TCM diagnosis. As to what pathogens it can vary from my experience, Ross river, flu, etc.

Hmm not too sure what you mean about leaky gut question? You mean you have it or something about it your curious about?

 

[JayCS]

As for journal articles on some of these facts there are in fact many

Much easier actually, like you've maybe seen me do:
State the title, the authors, the year, without linking. I can then find it in seconds.

 

[fibro849]

Much easier actually, like you've maybe seen me do:
State the title, the authors, the year, without linking. I can then find it in seconds.

Okay

 

[fibro849]

Okay

Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis​

Ekua W Brenu et al. J Transl Med. 2012.

 

[fibro849]

In the case of pathogens may have initially caused the condition, in regards to detection, this is the realm of TCM diagnosis. As to what pathogens it can vary from my experience, Ross river, flu, etc.

Hmm not too sure what you mean about leaky gut question? You mean you have it or something about it your curious about?

Oh all good, for some reason I couldn't see the rest of your post the first time.