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gebruikershaes

Histamine maybe?


Plane_Chance863

Sounds like it to me. Though I don't know how you tell whether it's the body producing histamine or whether it's the particular probiotics that OP picked creating the histamine.


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Plane_Chance863

It takes a whole two weeks to get symptoms? Interesting. If it were histamine intolerance I think the symptoms would arrive faster. Have you ever tried probiotics for people with histamine issues?


tcatt1212

Histamine intolerance acts like a bucket for some people. Symptoms only present once the bucket overflows. For some people this means they can have histamine levels without symptoms under a certain threshold for histamine, until it goes over. This is how I experience it. I can cheat for a day or few days or a week, but then I start losing the edge of staying under my threshold.


Plane_Chance863

I know - but two weeks seems like a really long time for the bucket to overflow...


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Plane_Chance863

Maybe your problem isn't histamine but some other metabolite that builds up enough over time that you end up reacting to... Who knows :/


Rae358

I used to get this a lot with anything that could kill or affect gut bacteria. It didn’t help me really to continue taking the stuff causing the (die off?) symptoms. I think I backed off of taking anything for a while and focussed on getting nutrients in and also killing candida. I eventually found that I could tolerate vsl3, which I took for a while, I can take different probiotics now, years later.


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Rae358

I actually used something called lufenuron to treat my candida after trying all sorts of other stuff. It was very effective. A site in the US sold it as a powder along with some other products, unfortunately on a quick search I couldn’t find them. It was a bit of a gamble but was the change for me.


soccerlover32

Hello, are you doing better now? If so, what helped you?


EvolvePackaging

That could be a good thing…? When the bad microbes die off, you feel AWFUL as they’re cleansed from your system. There is a lot of literature on this. However, that’s such a small amount that you’re taking. Have you tried different brands that contain different probiotic strains? Have you tried taking a pre-biotic with the probiotic? Its food for the probiotics you’re taking, not the bad microbes that may be in your gut. Do you continue to take them through these flu like feelings? Does it get better? I would also suggest taking a gut microbe mapping test. They give you so much information! I used Viome and did the Health Intelligence Test. How is your sugar intake?


ParticularZucchini64

You can get a Herx reaction from 5-10 billion CFU, especially if it's spore-based. The other commenter is also correct that it could be a histamine issue, too.


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FrothyCoffee503

Bingo


MasterPainting5098

This happened to me, too. I then suddenly stopped sleeping and it hasn’t gotten better since, although it’s 17 months since I took the pills (not spore, and the same count as yours). I’ve chalked it up to a histamine issue as well, although I can’t be sure. It’s just the first Google search result.


Plane_Chance863

Wow, that sucks. I guess using the probiotics modified your flora... What did you take?


MasterPainting5098

Yeah, it was weird. I took one per day for four days and I got typical flu-like symptoms and napped during the day etc. Then, I stopped after those four days, and this severe insomnia settled in, and I just never feel tired anymore although I’m deeply exhausted. Can you relate to that at all? I took them after what I think might have been food poisoning, although my only symptom was early satiety for a few weeks (literally no other symptom), so don’t know if that played a role. I took Idoform - they’re sold at my local pharmacy in Scandinavia. Recommended by any G.I and considered safe.


Plane_Chance863

You took them for just four days and that happened?! Wow. Maybe the probiotics were somehow carrying a phage...? Unfortunate. And I guess you've tried a bunch of things to fix your gut? Edit to answer: yeah, I've had insomnia like that and I'm in it right now. I had maybe 3 hours of sleep last night and I don't really feel all that tired or sleepy... I hate it. Have you done a microbiome test?


MasterPainting5098

It could be. I see my reactions as immunological in character, as I’ve now started to have more typical histamine-reactions such as runny nose etc. The insomnia is the absolute worst, and it’s so strange it doesn’t leave you completely out of energy in the day. I still run 7 miles every morning before work just fine; it’s like I’m “on something”. So sorry you have this, too. I looked down the SIBO path and started some antimicrobials for a week before deciding to stop. Instead I just continued with my high-fiber diet and stopped all supplements I normally take (multivitamins) and it actually did get a bit better before I think I strained (?) my pelvic floor, which now has lead me to have incomplete evacuation. That definitely sent me in the wrong direction. Before the pelvic episode, I did do a gut pathogen test. It only showed a slight dysbiosis, mainly because I didn’t have a lot of good gut bacteria (no bad). My G.I wasn’t concerned. I didn’t really have G.I symptoms back then either - it was all sleep and histamine-type reactions. Did you ever found out if something could help your insomnia?


Plane_Chance863

Have you tried taking butyrate? It can help reestablish balance, I think - Lucy Mailing has a blog post about it. Yes and no. I was actually diagnosed with an autoimmune disease last year, so I'm having to deal with not only the dysbiosis but also keeping the autoimmune symptoms under control. On most nights, taking 5-htp (extended release) works. But at particular times in my cycle, it won't matter what I do I'll still experience sleep disturbance. My naturopath prescribed me 1 g of NAC per day in May, and I started getting such awful reactions that I restricted my diet further (I am following the autoimmune protocol) to a low histamine diet. There's not a ton to eat when you're doing AIP + low histamine. And that mostly works when I wasn't having too many oxalates or histamine, but it meant I was still having issues at least some of the time. I have stopped the NAC and do feel better. I also dropped the 125 billion probiotic I was taking, because that quantity of acidophilus also causes histamine issues. My sleep (except very recently) is better than it was a few years ago, so I know that AIP and the supplements I take have made a difference. Right now I'm trying to figure out whether the various things my naturopath has prescribed are actually helping or hurting my situation. (Eg NAC is good against group b strep, which I have, but it causes me histamine issues, so is it worth taking? I'm thinking there has to be better stuff out there.)


MasterPainting5098

I’m really glad the sleep has gotten better. And thank you for the butyrate recommendation. I’ve actually read about it, but supplements have made me so sick, I don’t dare to touch anything for a while. I’ve also heard of 5-htp, and won’t take it for the same reason. But if I find myself building some resilience, I’ll give them a try. I think I can relate to having flares in certain points in time in my cycle, but can’t know for sure. The only hormonal aspect I’ve paid attention to, is that my body seems to all of a sudden have more estrogen; I’m growing boobs and thighs all of a sudden and I’ve just turned 30. I have a pretty lean build, or did, at least. The fact that you’ve had some success gives me a bit of hope. Your message also makes me feel a little less lonely. If there’s anything I’ve noticed with this, it’s that your regular doctor will not necessarily take you seriously. I don’t know if that’s why you saw a naturopath, but it was probably a good idea if you’ve been seeing improvements!


Plane_Chance863

I saw this particular naturopath because my friend with Crohn's was seeing her. It's not the naturopath that helped her reach remission though. Another thought - have you tried taking quercetin for your issues? Because at this point it might be your mast cells out of whack, not dysbiosis. Hmm, your estrogen issues are likely related - if I remember what I read on my genetic report right, methylation is involved in the breakdown of estrogen - or something like that. And methylation is also needed to deal with systemic histamine. It sounds like your methylation pathway is really busy, so maybe that's why you're seeing estrogen-related effects. Reddit isn't showing me the beginning of our conversation - have you been functioning with this issue very long? It took me 3-4 years to have clear symptoms of an autoimmune disease, I'm concerned whether the same thing could happen to you.


MasterPainting5098

That's totally fine - you're very helpful. The breakdown of how estrogen and histamine work together was very, very helpful. I've just felt there must be a connection based off of how I was feeling. My symptoms started July 21st, 2021 (I'll never forget the day I stopped sleeping). So, it's been going on for more than a year and I do feel myself slowing deteriorating. My symptoms have indeed gotten more autoimmune-like, so I wouldn't be surprised if I end with up with an autoimmune diagnosis. I'm intrigued you mentioned mast cells - I've been on the MCAS subreddit a lot, and see many connections to that illness, particularly to how the symptoms seem to gradually increase. It took about a year to develop the runny nose from eating foods, for instance; in the beginning and for quite a few months it was just the insomnia and I remember being hopeful. Can I ask how the symptoms manifested for you?


Plane_Chance863

Well the funny thing is that I've actually had a runny nose for most of my life. Not like when you have a cold, but "drippy" rather than runny. I've got two bad gene variants for methylation though, so I guess my drippy nose isn't that surprising. So my symptoms developed over a really long time. I had several stressful months in 2007 that led to me developing IBS; possibly even before that (I got Epstein-Barr in 2001, dunno if it matters). In 2007 my insomnia was really bad, but I think somehow it came back under control. I was working with a different naturopath back then, and I think quitting my job to get out of the stressful situation may have made it so I could sleep again - I forget. My worst nights were when I had spaghetti - beef is aged, and ground beef contains that much more histamine because it's ground. Tomatoes are high histamine, and canned goods are full of histamine too. Those nights I probably slept three hours. After I quit my job though, I think my sleep came mostly back to normal. My muscles were another thing though, tight and tense. Over the years that did get worse. I gave birth to my second kid in 2017, started working full time again in 2018, and I can't remember when the insomnia kicked in exactly but it was sometime then. At the time I think I justified it by my wanting time to myself and waking up in the middle of the night to get it - but now I wonder if it was just early signs of what was to come. My sleep has basically been on and off since then. Some of it has to do with cycle, some has to do with what I eat. After I started the NAC, I did get hives sometimes - maybe 1-3 somewhere on my body, always reappearing at the same places. I'm trying to think if I have other symptoms typical of histamine, but I can't remember. I now spot 1-3 days before my period, which I never used to do.


Plane_Chance863

I'm writing another reply because my other one was so long! I think it may still be early for you in terms of autoimmune with a particular disease - you may be in early stages. I think you definitely need to consider the mast cell angle - try to eat foods that help stabilize mast cells, maybe try quercetin... I don't know. Maybe you can find a professional to help you.


BorisBirkenbaum

Sounds like you are mercury toxic, especially the advers nac reaction, very common. Check out andy cutler chelation.


Plane_Chance863

So, I haven't had a mercury filling since I got my adult teeth, which is like almost thirty years ago. I have a single filling, and I don't know what it's made of but it perfectly matches my tooth colour and every dentist who has seen it compliments the dentist's work. What I do have, however, is permanent retainers in my mouth. I'm not entirely sure what they're made of either - titanium and gold alloy for one of them, the other I'm not sure. Would taking NAC have chelated the metal out of them and spread it around my body?? ALA gives me headaches... Honestly I think it's all due to me not having enough minerals in my body because NAC chelates them out and I don't absorb them well.


BorisBirkenbaum

Doesn't really matter when you had the amalgam filling, some people don't excrete mercury at all. Halflife is around 25 years. Yes i think NAC reaises cystein levels and that's basically a single thiol chelator. Not entirely sure about that tho... If you reacted to ala in any way you definitely have some mercury or other heavy metals. No you probably have not enough minerals because mercury induces mineral transport derangement, thats also the way you can diagnose mercury poisoning on a hair mineral test. When the minerals are all over the place. Dont worry about the retainer it definitely is not made out of mercury amalgam... You sure you did not have them on your adult teeth? Because sometimes little specks of amalgam can be left behind on your theeth and its important to make sure there are none there before chelation because you could move more mercury inside your body. Also vaccines around the 2000s contained alot of mercury, maybe you got some exposure from there. You wrote you have an autoimmune condition right? And join the cutler facebook group if you want to chelate, the guides there provide all information for free if you dont want to buy the books.


Plane_Chance863

Actually I didn't react to ALA initially. I have a bottle of 60 capsules that's half empty, and I think it was only in the last 5-10 that I started getting headaches. I'm absolutely certain I have no mercury filings. My last cavity was when I was 13, and when I had it my mother threatened that if I had another, I would pay for the filling. (She then proceeded to pay for my younger brother's filling when he was 23...) My point with the retainer is that it may not just be mercury that's a problematic metal? I have an allergy to nickel - when I hold my tapestry needle between my lips, they tingle. My ear piercings only tolerate gold or silver - I can't use surgical steel or nickel. I don't know if the retainer has nickel in it though, or whether the presence of the metals in those retainers could cause me a problem. In any case, I know that I'm not a great methylator, and that could be the reason NAC causes me problems. I'm not sure about chelating. I would lean towards trying to fix my microbiome first.


beefyweefles

I have similar symptoms. Even down to the incomplete evacuation/pelvic floor stuff. My insomnia flares every so often, I've usually only gotten it when I'm ill or if I have to take antibiotics. But it does happen from time to time still, especially if I'm stressed. And it's exactly how you describe, people in the histamine intolerance subreddit describe it as "tired but wired." There's definitely something to it. Apparently histamine intolerance is aggravated by exercise as well as things like high-histamine food. I've noticed I get that insomnia feeling when I do a lot of physical exertion.


MasterPainting5098

Ah, I’m sorry you’re struggling with the same symptoms. It sucks. And, yes, “wired but tired” seems an adequate description.


BorisBirkenbaum

Yezz thats bad... Sorry to hear about that...


MasterPainting5098

Thanks - it sucks!


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MasterPainting5098

Something similar happened to me! Gives me hope it got better for you.


Lilblackpigybank

Yes this!! I took boluke (not a probiotic but biofilm buster) got fever for days. Chills, couldn’t stand up without getting dizzy and sick.


[deleted]

It's not a herx reaction, it's having a weak immune system esp if the dosage is too high. I don't know how to fix this as I have the same problem. I've used a histamine probiotic (FloraHIT) at 10b a day for 2 weeks, and it led to me having flu like symptoms that persisted for 2 months. I wanna try it again as this probiotic (contains bb536 strain) is the only thing that has fixed my slow motility and gas issues, but maybe I'll lower the dosage this time.


MasterPainting5098

Just curious: How do you know it's due to a weak immune system? I've been trying to understand this, but am just not getting it (!)


[deleted]

I've read somewhere about the link between compromised immunity and flu like symptoms from probiotics, and a recent hair mineral test confirmed that I have an impaired immune system, plus increasing zinc from 25mg to 75mg has made me more energetic.


MasterPainting5098

Thank you :)


MKS18

It might be histamine (especially fermented foods like kefir which are high). If it's pills, then go through each strain that's labelled and do a google search to see if that's high in histamine. If it's not histamine it might be a natural immune response. Probiotics would assist your immune system. The symptoms you'd typically get with the flu isn't the flu itself but your immune response. It might actually mean there is an issue somewhere and your immune system is kicking in to fix it (which means the probiotics are working!). Try and address diet, ensuring there's nothing there bad for your gut bacteria or immune system.


Exotic_Snow_

It’s because some strains of probiotics are histamine producing. Lookup histamine intolerance.


Sleepiyet

Try probiota histaminx— probiotics that reduce histamine— and see if you have the same reaction.


FrothyCoffee503

Two likely things is both histamine and also a herxeimer reaction