• 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.

Probiotics - die off vs whats not agreeing with your body

Messages
62
I've been trying to incorporate Probiotics several times without any real success. As with everything, I know this is very individual. Something that doesn't work for you might work for someone else etc. But how can one distinguish whats really "die-off" which I personally feel being thrown out way too easy on the forums for all kind of side-effects, and whats not agreeing with your body?

I've tried:

Jarrow EPS > Ortho biotic > Renew life (Bfidio) > Align > Culturelle (currently ON)

My side effects: I can take that you normally would have issues with your gut/bowel movements, some cramps etc. Apart from this, for every probiotic I'm experiencing depression which is creeping in to life along with general weakness, body aches, dizzyness etc. My cognitive functions is going downhill, impairing my focus/motivation and decision-making which is very notable at work. Today I found myself at some pretty bad brain fog/confusion when going shopping.

I'm at day 6 of Culturelle brand (lactobacillus rhamnosus GG) which I've heard good things about, generally well-tolerated. But I'm figuring how long I can take this. As with the other probiotics, I eventually just quit because it was just too much.

My background: Gut/IBS problems for long time with other physical/mental symptoms. I'm strongly thinking that I either have some bad bacteria or a systemic case of Candida. I've done a lot of herbal anti-biotics without taking probiotics for some months which I'm now trying to correct. Did a parasite cleanse just recently in hopes of making it easier to get my flora under control. I also started taking some prebiotics and will change my diet for the better. Before this Culturelle brand, I indulged in a Lot of sugars/junk food and stuff on the weekends which might explain a bit why I didn't progress.

Anyone have an opinion on this, do I have to go through hell to feel better? I'm very determined on trying to push-through this time, just a bit cautious about possible harming myself even more.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Try VSL 3 probiotics, will have all the strains you need and very high dose. Probiotics shouldn't cause side effects in and of themselves but sometimes it can cause a heightened histamine response. The other stuff you are doing sounds great too, I would just keep moving along with it and see where you get. Be careful not doing too much though, its normal to feel a bit worse while fighting stuff off but you do not want to over do it. Definitely de tox as much as possible and take things to help flush out dead stuff left in the system.
 

adreno

PR activist
Messages
4,841
I am not surprised that the probiotics are causing an immune reaction in you. This might abate after a while as the bad bacteria is crowded out. However, many PWMEs seem to tolerate lactobacillus bacteria less well. You might want to try pure bifido strains instead. Perhaps even better, you might try prebiotics as they are way more potent an stimulate a wider array of species.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Part of the problem is that there is a lot we do not know still. Some probiotics are better researched than others and they have multiple effects themselves which may include both positive and negative ones, and also impact other gut flora, which again may have multiple effects.

Then you have to consider that we don't know much about ME/CFS. For instance, a lot of people with ME/CFS are lacking certain common bacteria. Is this the cause of the disease or something subsequent? I had hardly any biffidobacteria for instance so I've been suplementing. But who is to say that my body doesn't kill it because it is bad for me? Or maybe it would be good for me but can't survive for some reason, perhaps a bacteriaphage kills it off? Who knows.

So there is a lot of guess work. I try not to take more than one type of bacteria at a time so that I can better judge reactions. Most probiotics on the market contain several different all mixed in together, so if you react it is hard to know what the cause is. Then you get stuff like Align where the studies showing some improvement in patients were on much higher doses than they sell you, so it's not likely to help. I think Align doesn't even populate the gut, so any gain would be transcient.

The probiotics on the market are pretty poor in their spectrum. Most are lactic acid bacteria and bifidos, but the gut has way more than that in it. You could be needing something you can't get in a probiotic. No probiotic contains everything you need, even the ones with lots of types in them are only covering a very small range.

I think with taking probiotics, if they are making you feel worse then probably you shouldn't continue taking them. But it will probably take a short while after taking anything that your body will reject anything it doesn't want and keep anything that's useful.

Personally, what I did was get tested with uBiome because at least then you have some data on what is and isn't in your gut and you can go from there with a bit more certainty.
 

dan062

Senior Member
Messages
120
I'm also wondering the same thing.

I may have had my first herx reaction this morning. I'm using a very basic probiotic that I bought in a local health food store, and quadrupled the dosage this time to see if it was actually having any effect (probiotics are supposed to be very safe).

I did have what felt like a flare up this afternoon (lots of joint pain and severe brain fog), so I've just taken a second dosage to see if that was fluke / real. I'm hoping for that latter, actually, just to know that I'm going in some kind of a direction.

@snowathlete: I read Blaser's book recently, and the points you raise are what really frustrates me about probiotics. It seems as if once certain species are gone (through abx use), which aren't available as probiotics (as they're currently unculturable - at least on a non-research scale) that they're really gone. I was hoping for some kind of an upside beyond fecal transplants, or that getting the 'missing bacteria' back is the subject of early research (which it is).

The only thing that interests me about lacto/bifido is that these seem to be disproportionately present in breast milk and the newborn's microbiome, before becoming far less present in later life (I've since given the book away so can't confirm if my memory is correct about this).

My thoughts are that these species may possibly act as seeding species for other (beneficial) microbes, but I know almost nothing about the ecology of the gut and whether this is possible or not.

Bearing in mind the limitations you've mentioned above, my idea (if there is a Herx) is to find a cheap probiotic that doesn't require refrigeration and take it in divided doses through the day (perhaps every two hours).

I think this strategy may work to reduce the population of whatever species the probiotic is antagonizing on a transient but repeated basis -- and perhaps eventually a permanent shift would take hold.
 
Messages
62
Thanks @Martial, I might have a look into VSL#3 on my next purchase, heard some good things about that one too. Although, I'm a bit into doing just a one strain as @snowathlete mentions to determine the effect by itself, I agree that its easier to judge what's working and what's not where in the probiotics area there is a lot of guess work. That's actually why I've gone the Align and now Culturelle route.

@adreno, I've tried pure Bfidio (Renew life 15 billion) think it's 6 species of them. Same thing happened with those, even tried smaller doses with some prebiotics (resistant starch) to get them in to my intestines but didn't recall it going very good. Got the same side-effects. I'm taking prebiotics at the moment btw in form of Apple pectin/Apple fiber. Also done some Inulin but not sure about that one possible being bad if Candida is present. Also, taking prebiotics on its own wouldn't do much if I dont have anything to feed right?
 

adreno

PR activist
Messages
4,841
@adreno, I've tried pure Bfidio (Renew life 15 billion) think it's 6 species of them. Same thing happened with those, even tried smaller doses with some prebiotics (resistant starch) to get them in to my intestines but didn't recall it going very good. Got the same side-effects. I'm taking prebiotics at the moment btw in form of Apple pectin/Apple fiber. Also done some Inulin but not sure about that one possible being bad if Candida is present. Also, taking prebiotics on its own wouldn't do much if I dont have anything to feed right?
Well, if they are actually working to change your intestinal environment, you're going to get side effects. Changing your microbiome just isn't something you can do in an afternoon.

True, if you completely eradicated your species, then prebiotics won't help. But I believe most people will have something left. The worse condition your gut is in, the more side effects you're gonna get. You might have to go extremely slow. Many don't tolerate more than 1/4 teaspoon of fibers a couple times a week.

I would recommend that you wait until the side effects calm down before taking another dose. Then take the next dose and wait again. Hopefully you will gradually be able to tolerate more frequent/larger doses.

You might look into the resistant starch thread, where this is discussed in length.
 

end

Messages
263
@kracken

LGG is the best strain I have found.

Other strains I have trialed have caused problems(including VSL3)as MOST PROBIOTICS INCREASE LACTATE blood levels. Good luck.
 
Messages
62
Ok, so I'm 9 days in to Culturelle 10 billion a day including 1 tbsp of Apple fiber and 500-1500 mg of Inulin. Seems most of the worst side-effects are somewhat lifting including depressive/emotional feelings. However, I believe this is due to other supplements I take to combat this (e.g Ashwagandha).

My BM's seems pretty sporadic, at least 2-3 a day but they are much more firm and normal which I believe is pointing to something good, sometimes a bit constipated though. Nausea is getting a bit better too, I had pretty profound nausea for hours after having a BM.

I do have a lot of physical symptoms like aches in my body/lower abdomen and especially joint pain, feels like some inflammation going on. My skin is worse also on my face where as I've been constantly red/inflammed before, this is worse now. A small wound opened up next to my nose which looks infected (yellow stuff coming out). I'm thinking this must be some fungus or something. Gonna talk to my doc tomorrow about this, I really believe it might be some Candida overgrowth I've had for a long time...

One thing that worries me though is that I either seem to be very dehydrated even though drinking a LOT of water per day. My pee is always yellow. Today I woke up having very dark urine/almost brown looking.

Oh and I've taken Turmeric for around 2 weeks as well, just recently read about antibacterial/removing fungus so this might explain some of the "die-off" ? I will continue with this strain and try to hold on, might take some day off now just to give my body a break. At least I'm going to lay off the Turmeric for a while.
 

Gondwanaland

Senior Member
Messages
5,094
Ok, so I'm 9 days in to Culturelle 10 billion a day including 1 tbsp of Apple fiber and 500-1500 mg of Inulin. Seems most of the worst side-effects are somewhat lifting including depressive/emotional feelings. However, I believe this is due to other supplements I take to combat this (e.g Ashwagandha).
I think the fiber/inulin are binding some byproducts (ammonia etc) and this really helps.

I was going to suggest liver support based on your skin reactions, but you have been taking turmeric... are you reacting to salicylates? Stopping everything and replenishing magnesium helped me with that recently.
 
Messages
62
I think the fiber/inulin are binding some byproducts (ammonia etc) and this really helps.

I was going to suggest liver support based on your skin reactions, but you have been taking turmeric... are you reacting to salicylates? Stopping everything and replenishing magnesium helped me with that recently.

Thanks, might up the Inulin dosage a bit then. I have Ornithine at home which might help if its ammonia. So Turmeric would be good to continue then? Looking from my gene results, Nutrahacker says I should avoid Curcumin as I have a homozygous part of CYP1A2 (Gene Function: Hydroxylation or dealkylation of xenobiotics, Phase I, metabolize E2 to 2-hydroxyestradiol) but I'm not sure how big of impact 3g would have per day.

I have no knowledge about salicylates other than the stuff I just read right now (http://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/salicylates#what). It might play a role actually since last 2 weeks, I've begun eating a lot of berries for breakfast, broccoli, cauliflower, store bought vegetables (hand picked ready to eat salads) and fruit flavoured yoghurts. These are all high in salicylates according to the site. Maybe I should try your advice!
 

Gondwanaland

Senior Member
Messages
5,094
@kraken
If the inulin is helping there is no need to exaggerate.
I think 3g turmeric is a lot :eek:
You can also do a search for salicylate here at the boards. You'll find more info on that.
Pay attention to excess magnesium as well. Anything in excess can be harmful and push other imbalances ;)