Mady Hornig interview from Oslo ME conference - November 2017

[Diwi9]

Great interview with Mady Hornig discussing subtypes, how the gut is involved in immune function, hypothetical treatments, disease progression, and Rituximab's role in ME/CFS. The interview is in english, with norwegian subtitles.

 

[ebethc]

has anyone had any microbiome tests, like uBiome? I don't know if I have dysbiosis or a chronic gut infection or a hybrid... I *think* that I HAD both, and am now down to dysbiosis alone.. .definitely better, but not optimal... Oh, and GI docs are no help... They just do tests that are apparently the wrong tests b/c they don't identify anything acute, and then they tell me to take a lot of probiotics..

2nd... how are fecal transplants done? is it a suppository or a capsule?

thanks

 

[Nickster]

She talks about fecal transplant as a treatment. This is used in cdiff. I don't know if there is much data on that. My son Nick has horrible intestines and says when he eats and the food passes thru it feels like poison is being released in his body. The gi docs just recommended omeprezole and probiotics and neither have helped.

 

[ebethc]

I think I have terrible leaky gut, and sometimes I feel poisoned, like the waste is passing thru leaky gut to my bloodstream...

 

[boolybooly]

My son Nick has horrible intestines and says when he eats and the food passes thru it feels like poison is being released in his body.

A lot of foods do contain toxins which the human immune system and liver normally deal with. I have had a virally induced ME with immune dysfunction and raised allergies for 30 years and my food intolerance has begun to increase in the last decade. I can now no longer tolerate high salicylate foods like leafy greens which give me bad headaches and also nightshades like potato and tomato which are very common in foods and are high in alkaloids and cause an immune reaction for me giving me mouth ulcers whenever I eat them and a bad malaise, among other things. Also cannot tolerate soya any more, does something odd to my nerves.

A good list of salicylate foods is here.
http://salicylatesensitivity.com/about/food-guide/

For nightshades you can just google - nightshade vegetables - and you will get a lot of info.

 

[bertiedog]

What a wonderful interview and researcher. I think she has just about covered all bases and I am 100% with her about the problems with the gut causing metabolites that get into the blood and then affect brain function.

I so look forward to reading the results of her various studies. I am 70 early next year so its all getting a bit urgent! Changing my gut has helped with energy but my immune system is still so weak and I am picking up so many viruses so there is still a huge amount that is needed for me to be permanently better.

Pam

 

[bertiedog]

has anyone had any microbiome tests, like uBiome? I don't know if I have dysbiosis or a chronic gut infection or a hybrid...

Yes and it showed I had 87% bactericides and hardly any beneficial bacteria. Nil beneficial E Coli, nor Lactobacillus and Bifido but lots of pathogenic ones so it was a very bad result.

Since September I started taking stuff like Neem and also probiotics like Prescript Assist, E Coli, L Fermentum and L Rhamnous but I have recently also taking some with L Acidophilus and its brought back SIBO badly and having had great energy 100% of the time for a week I have picked up yet another nasty virus and feel back to how I was.

So my experience with treating the gut is that it will so readily go back to its bad state if the wrong probiotics are taken. I am back to Prescript Assist for a month and also taking a macrolide to kill off some of the pathogenic stuff. Also I have to address yeast issues because the metabolites of Clostridia species have shown up in my recent Organic Urine Profile (like a MAP) but that's another story which isn't a happy one either!

Pam

 

[unicorn7]

Yes! This is so good, I’ll be very interested in her next research.

She really makes links to a lot of different theories, like the story about dysbiose and clostridium difficile and the difference between the two, very interesting!

 

[ebethc]

Yes and it showed I had 87% bactericides and hardly any beneficial bacteria. Nil beneficial E Coli, nor Lactobacillus and Bifido but lots of pathogenic ones so it was a very bad result.

Since September I started taking stuff like Neem and also probiotics like Prescript Assist, E Coli, L Fermentum and L Rhamnous but I have recently also taking some with L Acidophilus and its brought back SIBO badly and having had great energy 100% of the time for a week I have picked up yet another nasty virus and feel back to how I was.

what are bactericides? how are they different from bacteroides? having more firmicutes is good, right?

what does neem do exactly? I haven't tried that one yet, but I've heard of it, and I know that it's good for SIBO, but I'm not sure HOW it works for SIBO..

So my experience with treating the gut is that it will so readily go back to its bad state if the wrong probiotics are taken.

so true!!

I am back to Prescript Assist for a month and also taking a macrolide to kill off some of the pathogenic stuff. Also I have to address yeast issues because the metabolites of Clostridia species have shown up in my recent Organic Urine Profile (like a MAP) but that's another story which isn't a happy one either!

I have had good luck w P.A., but it makes me tired for some reason... I can't take anything that makes me more tired, especially in the winter... It's a good probiotic

Have you heard the criticism of oregano oil..that it kills ALL bacteria indiscriminately? It might be good for SIBO due to this, but maybe not too often?? not sure it this is true, or if it is, what that means..

Are you familiar w Biotics? You're supposed to take FC Cidal and Dysbiocide together, but I'm thinking that I want to to FC Cidal alone because I believe it's more for fungus, and Dysbiocide is more for bad bacteria... Do you know if this is true?

thanks