Severe herx from probiotics! Expertise needed

[Captain John]

I took some probiotic before I read about it. It was really stupid, but done is done. Took one pill 5 days ago and another 4 days ago, and I don´t know if what I am eksperiencing now is a Hex or if it´s permenant? Could you give me your proffesional opinion?

I took Udos Choise High-bifido (102 billion CFU):
45.900.000.000 bifido breve
20.400.000.000 bifido longum
15.300.000.000 bifido bifidum
8.160.000.000 lacto casei
4.080.000.000 rahmnonsus
3.060.000.000 acidophilus
3.060.000.000 plantarum
2.040.000.000 salivarius

I experience nervousness, headaches, anxiety, stomach aches, pain in my lungs and have a bit of trouble breathing and servere fatquie when I eat. It would really matter a lot, if you could give me your oppinion on what is happening and what I can do? Thanks in advance!

 

[Wonkmonk]

Quick search shows that it seems to be reported elsewhere, too.

https://cfsremission.com/2017/04/19/reminder-probiotic-can-cause-major-herx/

That's surprising, because until now I wasn't aware that probiotics can make people worse.

I was aware of studies that say Bifidobacteria can produce anti-herpetic effects, so this may also be the cause of a herx:

https://www.ncbi.nlm.nih.gov/pubmed/23054724

The question now is if it is a herx as described by Dr Lerner, which is preceding recovery with continued treatment or if it leads to permanent worsening.

 

[Wonkmonk]

After searching a bit longer, I found one study that says a negative "die-off" or herxheimer reaction can happen following the start of probiotics (last para):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676381/

Apart from that, lots of stories on blogs, YouTube, other forums, but not scientific studies.

Among these non-scientific sources, the main recommendation seems to be that the herxheimer reaction is a good thing and if not too strong, the probiotic should be continued until the herx stops:

https://cfsremission.com/treatment/...illnesses/changing-microfloras-by-probiotics/

https://www.buyprobiotics.co.uk/the-herxheimer-reaction-from-daily-probiotic-use/

 

[Captain John]

After searching a bit longer, I found one study that says a negative "die-off" or herxheimer reaction can happen following the start of probiotics (last para):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676381/

Apart from that, lots of stories on blogs, YouTube, other forums, but not scientific studies.

Among these non-scientific sources, the main recommendation seems to be that the herxheimer reaction is a good thing and if not too strong, the probiotic should be continued until the herx stops:

https://cfsremission.com/treatment/...illnesses/changing-microfloras-by-probiotics/

https://www.buyprobiotics.co.uk/the-herxheimer-reaction-from-daily-probiotic-use/

Thanks! I read about the Herx and came to that conclusion that it might be it. But I stopped 4 days ago and it is still very violent. I do not hope it's permanent, but it would be impossible to keep taking it because it's simply such a strong reaction and I do not know what the consequences are: \

 

[Wonkmonk]

The lady in the video says it is collateral damage of a "war" between the new (good) bacteria and the old (bad) ones. Either the good guys win over time or the bad guys come back, so it should not be permanent and at some point it should be either the old state (bad guys win) or a better new one (good guys win).

That said, there doesn't seem to be much scientific evidence behind any of these claims. But they are being reported all over the internet, so there might well be some truth in it.

I also have not seen any reports of permanent worsening with probiotics, apart from very rare cases of sepsis or other severe disease caused by the new bacteria themselves, and that seems to occur almost exclusively in children or immunocompromised people.

 

[Captain John]

The lady in the video says it is collateral damage of a "war" between the new (good) bacteria and the old (bad) ones. Either the good guys win over time or the bad guys come back, so it should not be permanent and at some point it should be either the old state (bad guys win) or a better new one (good guys win).

That said, there doesn't seem to be much scientific evidence behind any of these claims. But they are being reported all over the internet, so there might well be some truth in it.

I also have not seen any reports of permanent worsening with probiotics, apart from very rare cases of sepsis or other severe disease caused by the new bacteria themselves, and that seems to occur almost exclusively in children or immunocompromised people.

Haha yeah, that gives me a bit of hope However, I have to say that the pages that speak so well about probiotics lack a hugely important factor. What if you have taken bad bacteria and they win the fight. All the pages seem to focus on getting the right bacteria in the mouth, but nobody really knows what the right bacteria are because we are different and because we react differently. It's a dangerous game, but if you win, I think it will make a huge difference.

 

[Wonkmonk]

I think the supplements are tightly controlled so as to only contain good bacteria. The companies would have huge liability issues if they didn't take care of this properly.

 

[CreativeB]

I'm not sure ... but would taking a combination of pre and probiotics be better ... to feed the good bacteria?

 

[ljimbo423]

Thanks! I read about the Herx and came to that conclusion that it might be it. But I stopped 4 days ago and it is still very violent. I do not hope it's permanent, but it would be impossible to keep taking it because it's simply such a strong reaction and I do not know what the consequences are: \

I use to get very sick taking less than 1 billion CFU a day of probiotics. If I had taken 102 billion, I would probably have felt like I was going to die. Die-off symptoms to probiotics in cfs is very common and vary from person to person.

From the research I've done, probiotics can stay in the gut for about 1-2 weeks, they do not stay permanently. I also agree with @Wonkmonk , that probiotics are extremely safe.

So your symptoms should slowly fade as the probiotics clear from your gut. I slowly worked my way up to 50 billion cfu a day of probiotics with no problem. I have gone up to 400 billion a day without issue.

I hope you don't stop taking probiotics because of this. I encourage you to buy a much weaker probiotic, like maybe 1 billion cfu and see how you tolerate that. The fact that you reacted so strongly to the high dose probiotic, tells me that your microbiota are significantly disrupted and need to be re-balanced.

As I have improved my dysbiosis and increased intestinal permeability, my health has improved accordingly. I believe they go hand in hand.

Jim

 

[lafarfelue]

Agreed. They are good for our guts and overall well-being but going through the herx stage(s) can be tough!

Start low and go slow be extra kind to yourself and rest a bit more than usual (if possible) while your system deals with the bacteria die-off. Are you adjusting your diet to help the good bacteria (and to stop helping the bad bacteria!) too...?

 

[Wonkmonk]

Are you adjusting your diet to help the good bacteria (and to stop helping the bad bacteria!) too...?

If I may ask, how would such a diet ideally look like? Is it just lots of fiber, greens, fruit and no sugar or is there more that one has to look into?

Are there supplements for prebiotics or is it just the diet?

 

[lafarfelue]

If I may ask, how would such a diet ideally look like? Is it just lots of fiber, greens, fruit and no sugar or is there more that one has to look into?

Are there supplements for prebiotics or is it just the diet?

There are natural prebiotics that I'm trying out, but I haven't noticed anything specific helping yet. But it's often such a long term thing that I might not be able to tell for a few months...

For me the general gist is:

• no fructose (due to malabsorption, no sugar at all, no fruit)
• no dairy (lactose)
• no grains, no carbs (I stick to as close to 0% as possible, but when I do occasionally have some, I avoid gluten/wheat and stay around 20-30% max for that day. I won't do this more than once a week, if that)
• limited beans/pulses/legumes
• fresh/raw greens (as many colours as possible, keep skins on for fiber and nutrients)

So this also means no beer or wine (sugar, grains).

I eat a lot of protein (animal protein works best for me) and a lot of natural fats and cold pressed oils to balance having no carbs. My body does well on this.

As you can see, I'm not super strict and for example, I now know that if I have carbs (like sweet potato or corn chips), then I'll up a particular probiotic for the next couple of days to reduce negative effects on cognition/body pain/motor function. But this diet alone seems to have helped me significantly.

I haven't been well enough to try specific diets that need preparation yet (like those that rely on bone broth a lot), but I'm getting there! Hopeful to keep increasing functionality ever so slightly the more I learn about my own microbiome.

There'll be those who swear by a particular diet or to avoid very specific things, but aside from the basics (like I listed above) it's so individualised. Like... I've figured out that i don't do well with soy or almond milks, but surprisingly do ok with oat milk. I can have a verrry occasional banana and not experience bloating or IBS at all. Tomatoes don't like me anymore (can't figure out what it does to my system, but I just don't feel right as they pass through my system?).

 

[Captain John]

I use to get very sick taking less than 1 billion CFU a day of probiotics. If I had taken 102 billion, I would probably have felt like I was going to die. Die-off symptoms to probiotics in cfs is very common and vary from person to person.

From the research I've done, probiotics can stay in the gut for about 1-2 weeks, they do not stay permanently. I also agree with @Wonkmonk , that probiotics are extremely safe.

So your symptoms should slowly fade as the probiotics clear from your gut. I slowly worked my way up to 50 billion cfu a day of probiotics with no problem. I have gone up to 400 billion a day without issue.

I hope you don't stop taking probiotics because of this. I encourage you to buy a much weaker probiotic, like maybe 1 billion cfu and see how you tolerate that. The fact that you reacted so strongly to the high dose probiotic, tells me that your microbiota are significantly disrupted and need to be re-balanced.

As I have improved my dysbiosis and increased intestinal permeability, my health has improved accordingly. I believe they go hand in hand.

Jim

Thanks Jim, that is really useful information! It has taken off a bit, but I still feel pain in my stomach .. Must try to wait it out. Do you have any suggestions for what to eat? I'm a little nervous about what I put in my mouth ...

 

[Captain John]

There are natural prebiotics that I'm trying out, but I haven't noticed anything specific helping yet. But it's often such a long term thing that I might not be able to tell for a few months...

For me the general gist is:

• no fructose (due to malabsorption, no sugar at all, no fruit)
• no dairy (lactose)
• no grains, no carbs (I stick to as close to 0% as possible, but when I do occasionally have some, I avoid gluten/wheat and stay around 20-30% max for that day. I won't do this more than once a week, if that)
• limited beans/pulses/legumes
• fresh/raw greens (as many colours as possible, keep skins on for fiber and nutrients)

So this also means no beer or wine (sugar, grains).

I eat a lot of protein (animal protein works best for me) and a lot of natural fats and cold pressed oils to balance having no carbs. My body does well on this.

As you can see, I'm not super strict and for example, I now know that if I have carbs (like sweet potato or corn chips), then I'll up a particular probiotic for the next couple of days to reduce negative effects on cognition/body pain/motor function. But this diet alone seems to have helped me significantly.

I haven't been well enough to try specific diets that need preparation yet (like those that rely on bone broth a lot), but I'm getting there! Hopeful to keep increasing functionality ever so slightly the more I learn about my own microbiome.

There'll be those who swear by a particular diet or to avoid very specific things, but aside from the basics (like I listed above) it's so individualised. Like... I've figured out that i don't do well with soy or almond milks, but surprisingly do ok with oat milk. I can have a verrry occasional banana and not experience bloating or IBS at all. Tomatoes don't like me anymore (can't figure out what it does to my system, but I just don't feel right as they pass through my system?).

That sounds reasonable, good approach Perhaps the problem with tomatoes has something to do with lectins? Try to google it, there is a lot of information!

 

[Captain John]

I think the supplements are tightly controlled so as to only contain good bacteria. The companies would have huge liability issues if they didn't take care of this properly.

Yes but the gut flora ind CFS paitients are different..

 

[ljimbo423]

Thanks Jim, that is really useful information! It has taken off a bit, but I still feel pain in my stomach .. Must try to wait it out. Do you have any suggestions for what to eat? I'm a little nervous about what I put in my mouth ...

Happy to help. I don't know if it's a good idea to make any diet changes rate now. I think it might be better to wait until these die-off symptoms have improved. My concern with you making any other changes is that could cause more die-off.

I had significant die-off symptoms just from reducing my carb intake. My suggestion would be, when you are feeling well enough. To very slowly reduce your intake of starchy carbs, like potatoes, rice, oatmeal, pasta, bread, etc.

To the best of my knowledge, those are the kind of foods that feed pathogenic bacteria in the gut the most. As difficult as it is to go slow with the changes, it makes the die-off much more tolerable.

Jim