Hopeful1976
Senior Member
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I started oregano oil on Saturday and feel progressively worse - nausea, chills/sweats, weak, burning muscles. Could this be die off? My m.e is very gut based...
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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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This is such a scary worldOregano oil "die off" is what pushed me over the edge from being chronically unwell into ME proper. Beware of assuming you just have to push through.
This is such a scary world
I won't take anymore
I appreciate your advice. I'm just tired of being so scared of m.e and it's severity.Sorry, I wish I could have had better news for you!
I started oregano oil on Saturday and feel progressively worse - nausea, chills/sweats, weak, burning muscles. Could this be die off? My m.e is very gut based...
Thank you for replying Jim - I'm so alone and suffer wit a lot of fear about becoming worse. I think I also have a cold as I have a cough...Hi Vicki- That most definitely is die off. I have made tremendous improvements in my health in the last year treating my gut and the mitochondrial dysfunction it is causing.
A year ago I was only able to do about 2 hours of physical activity a day without PEM. Now I am able to do 4- 6 hours a day without PEM! My apartment has never been so clean and organized!!
One of the most important things I have learned is that I have to support my mitochondria while treating my gut because the bacterial die off (lipopolysaccharides) cause an increase in the immune system function, oxidative stress and worsens mitochondrial function.
If I had to start treating my gut all over again I would first take supplements to support mitochondrial function like b-1, b-5, b-3, nadh, acetyl carnitine and most importantly coq10.
High dose coq10, 4-500 mg a day, has prevented flu-like flares, that would last 4-5 days, I use to get whenever I would go out walking!
The other thing I have learned is to go slow on any changes to help prevent a worsening of symptoms. My gut has always been a huge problem for me too.
I firmly believe my CFS is being caused by die off from bacterial lipopolysaccharides getting into my bloodstream from my gut, causing the flu like symptoms you describe, my PEM and fatigue, by upregulating my immune system, causing oxidative stress and impairing my mitochondria.
Jim
It's 50 mg per capsule I think. I am taking 2...How much were you taking? Perhaps start at a much lower dose and work up.
Bacteria or whatever is causing dysbiosis I guesswhat are you guys using oregano oil for? is it for candida or bacteria? interesting that oregano oil alone can cause die off! I want to look into this myself.
I'm so alone and suffer wit a lot of fear about becoming worse.
I'd love to hear how you succeeded - what did you take/eat ect.
Do you manage to take probiotics/prebiotics? Are you ok with lots of veg?I understand that fear very well. I live alone and was 80-90% bedridden for 6-8 years. There were many days when I didn't even know if I would have the energy to get food from the kitchen. Very scary!!
I think supporting mitochondria is the first place to start, which should help with the die off, fatigue and PEM. Do you take coq10? Next would be a low carb diet, mainly avoiding starches like potatoes, rice, etc, which are bad bacteria's best friend.
I can't stress how important it is to go VERY slow with these changes and allow your body to adapt to them.
Jim
Thank you too, for your input.I understand that fear very well. I live alone and was 80-90% bedridden for 6-8 years. There were many days when I didn't even know if I would have the energy to get food from the kitchen. Very scary!!
I think supporting mitochondria is the first place to start, which should help with the die off, fatigue and PEM. Do you take coq10? Next would be a low carb diet, mainly avoiding starches like potatoes, rice, etc, which are bad bacteria's best friend.
I can't stress how important it is to go VERY slow with these changes and allow your body to adapt to them.
Jim
that makes sense since the disease is originating mostly in the gutAll I know is my gut symptoms always corrolate with worsening m.e
Do you manage to take probiotics/prebiotics? Are you ok with lots of veg?
Why can't they just focus on the gut - how many of us tell over and over again how our guts corrolate with worsening m.e? If our guts are leaky (as evidence appears to suggest) and thus our immune systems are constantly fighting the bacteria ect coming through the barrier which results in our symptoms, why can't the researchers focus on healing our stomachs? It all makes sense to me that this is a strong possibility for the root cause...that makes sense since the disease is originating mostly in the gut
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4684203/One current model of disease suggests that a trigger event (e.g. infection) results in a chronic inflammatory state characterized by increased proinflammatory cytokine production, increased reactive oxygen and nitrogen species, altered intracellular signaling, increased intestinal permeability and systemic activation of innate immune receptors, altered glutaminergic and dopaminergic neurotransmission, mitochondrial dysfunction, and aberrant autoimmune response
There was also a significant difference in clearance of specific bacterial phyla from blood following exercise with high levels of bacterial sequences maintained at 72 hours post-exercise in ME/CFS patients versus clearance in the controls.
Evidence suggests that intestinal dysbiosis and systemic responses to gut microorganisms may play a role in the symptomatology of ME/CFS. As such, we hypothesized that post-exertion worsening of ME/CFS symptoms could be due to increased bacterial translocation from the intestine into the systemic circulation.
Nothing appears to come of it though - that's what upsets me most. The research is there - we are here telling - yet nothing is happening. Why is OMF not looking into it - they seem the only people who would move on this if they did their own research and discovered what we believe. It makes me so sad because I can't do it on my ownThis study explains how CFS is caused better than any study I've ever seen!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4684203/
It also found that levels bacterial translocation from the gut into the bloodstream were elevated at 72 hours (3 days) after an exercise challenge, where the control had completely cleared theirs! This 72 hour window is often the worst part of PEM.
Jim