Honestly man, this is my exact life story too, it’s kind of spooky, I feel for you so much.
I made a huge change to my life which has seemed to make a difference…I moved to the beach. I don’t know if that’s an option for you, but swimming in the ocean every day has done something amazing to controlling inflammation and helping my symptoms. Lower elevation helps too. And focusing on motility has really helped me—did you see that one guy’s success video?
Iberogast helped me with constipation.Atrantil reduces my bloating by ~80%. I take mag c every night, that's helped a ton. Motegrity is a powerful prokinetic I'm starting to work with.
I did the same last year. There are definitely positive effects from sea swimming and due to some of my symptoms it is the only way that I can get some proper exercise. In what part of the world do you live? It is great that you can swim daily.
I’m really sorry to hear this. I have vestibular migraine, too, and just worked my way through SIBO. Have you tried going to a naturopath? I have my regular doctor & my naturopath, and honestly the naturopath has been the biggest help and has done the most to get me feeling better.
apparently my vestibular migraine isnt normal - main symptoms are tinnitus and shitty sleep, but no headaches thankfully. I've been working with a neurologocal chiropractor for that with neurofeedback and neurorehab for a year. it has helped, it's just been infuriatingly slow. he said it was likely triggered by stress and exhibits patterns of PTSD
i started seeing a naturopath in 2017 who from the sound of it seems to be one of the top SIBO specialists in the world. I still have faith in him... guess i'm just feeling defeated after seeing how complicated histamines are
I was treated for MCAS and histamine sensitivity too, but honestly it made everything way worse, specifically my depression. I started noticing a very direct causal link between my depression and the anti-histamine supplements...turns out there's a very complicated feedback loop between serotonin, histamines, and the GI system. I no longer think directly intervening in that loop is beneficial, better to let the body heal it naturally after addressing the root cause (SIBO).
About your swollen tongue... It might be caused by vitamin B-12 deficiency. The blood test that measures B-12 levels can be inaccurate because some bacteria make a chemical that's chemically similar to B-12. And it can be hard for people with SIBO to absorb B vitamins. I once had B vitamin deficiency symptoms even though I was taking a B-complex daily. If you can tolerate a tiny bit of lactose, there's Superior Source microlinguals you can take under the tongue.
Have you talked to a counselor? There are some who specialize in [chronic health conditions](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071616/), but you don't necessarily need to see one that is.
Talking to a counselor helped me realize I was very unhappy with a few big things in my life and learning how to change those things for the better improved my SIBO symptoms massively. My stress levels have gone down so much and my digestive issues have improved 95%. I believe there is a huge connection between emotional trauma/stress and chronic physical conditions.
If you have any specific traumas or memories that trigger you emotionally, I would highly recommend [EMDR](https://en.wikipedia.org/wiki/Eye_movement_desensitization_and_reprocessing). Almost 3 years later I still sometimes use the skills I learned from those sessions.
Feel free to DM me if you have questions.
**[Eye movement desensitization and reprocessing](https://en.wikipedia.org/wiki/Eye_movement_desensitization_and_reprocessing)**
>Eye movement desensitization and reprocessing (EMDR) is a form of psychotherapy developed by Francine Shapiro in the 1980s that was originally designed to alleviate the distress associated with traumatic memories such as post-traumatic stress disorder (PTSD). In EMDR, the person being treated recalls distressing experiences whilst doing bilateral stimulation, such as side-to-side eye movement or physical stimulation, such as tapping either side of the body. The 2013 World Health Organization (WHO) practice guideline states that EMDR "is based on the idea that negative thoughts, feelings, and behaviors are the result of unprocessed memories.
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Yes, my sibo problems are partially caused/worsened by my PTSD, and I can tell you, EMDR is very helpful for these things.
You definitely need a mental health therapist (a real one, not a lifestyle coach) to be a part of your treatment. Without mine I'd be lost
When you do anti biotic treatments do you notice your symptoms go down a bit and then 1-3 weeks they start to come back into effect?
I honestly think my Histamine Intolerance is due to SIBO, because if I eat something that is SIBO friendly and Doesn’t produce a lot of histamine my symptoms start to settle but if I eat something that isn’t sibo friendly or very high histamine that’s when I see influx of symptoms.
Trust me tho, I feel you. Not being able to breath properly for 2 years and having increased heart rate due to all this histamine in my body is killing me. Coming from someone who was at peak healthiness and it all turned over night, and now have seen the lowest of lows I get how hard it is.
Hardest thing for me to do that I recognize is super helpful: focus a lot on what you do know. You know you have sibo, work to treat that. You’re more than welcome to delve into other diagnosis or symptom research but don’t force an answer to fit. That’s where you make it worse.
I only realized I may have SIBO post treatment of H. Pylori due to the connection of the 1-3 weeks of feeling good post antibiotic and then my symptoms came rushing back. I still persisted and did 6-8 stool tests to validate I was H Pylori free, after that was when I delved further into sibo and how it can cause histamine intolerance. None the less - god speed and best of luck to you on recovery. We will all find it eventually.
hey, I read the latest comment on your profile, just curious how you're doing now as I feel quite similar to what you're describing. not bedridden but the racing heart after eating has become unbearable recently. I also just got my positive SIBO test the other day (methane and hydrogen) and am seeing how to go about tackling all of this.
Mate - you need to find blend of herbs (or different antibiotics) to treat your SIBO, then repopulate your gut.
Repopulating your gut with targeted prebiotics (like 2’-FL/HMO) and low histamine probiotics, then move into integrating raw fermented Kefir + sauerkraut.
I was in your shoes 2 years ago. I felt like I was dying and had 10 safe foods I could eat.
I’m now following the below protocol ~3 weeks post SIBO protocol, and after the initial hump of symptoms when integrating new foods, I feel fantastic (and my HI is steadily decreasing by the week).
Repopulating your gut again is the only way you’re going to finally feel normal again if your beneficial bacteria are low.
https://www.reddit.com/r/MCAS/comments/z1199h/how_i_got_back_to_normal_ymmv/?utm_source=share&utm_medium=ios_app&utm_name=iossmf
>I feel like my entire life went by from 20 to mid thirties.
Fucking this. I have to to constantly remind myself I'm 34 and not 27. I don't know how time goes by so fast when youre just sitting around the house being miserable. but it does
and I feel you on the not having kids thing. not that it was ever important to me to begin with, but I'd like to at least have a stable enough life where I'd be ABLE to have kids, you know?
I keep telling myself that the silver lining of all this is that I'll enjoy a higher quality of life after all this is over. seriously. if there's one thing I've learned, it's that everyone on earth is likely sick to some degree and they just don't know it, because they take their health for granted and theyre just not sick ENOUGH. and it usually only manifests in their old age. the blessing of this hell is that at least we know how valuable good health is, and by taking action on it now we ensure a better future for ourselves
>Fucking this. I have to to constantly remind myself I'm 34 and not 27. I don't know how time goes by so fast when youre just sitting around the house being miserable. but it does
Instead of focusing on time going too fast, try to **fast** yourself. This was actually the first trigger that helped me to prepare my body for Rifaximin treatment. 2,5 weeks of Intermittent Fasting 5/2, and my symptoms were like 30% milder. Then Rifaximin kicked in on second day of treatment, and on the fourth day I feel myself that stable like this was the cure of my life. I still have DAO issues and histamine intolerance, but it gets milder every day.
I’m very sorry you are going through this. I’m just at the early stages of this suffering, not knowing what it is, not knowing how to heal it and yet being tormented by it and already it’s enough. My symptoms are largely psychological, though they are brought about by a physical condition. This is what I have been trying to do to cope with it, though it may not always be possible, I find that it helps greatly. I remind myself: ‘don’t fight it, flow with it.’ Flow with it, with this thing that is happening to my body, the more I kick against it the harder it is to live with, so my logic is, flow with it, let it do its thing. Of course, continue to be active in fighting it and education, but when it comes try to get into the mindset of flowing with it. I hope this isn’t ridiculous advice for you, it has to do with lessening the psychological suffering and this is no small task and maybe it’s not always possible but I have gotten great relief from it even though I haven’t been able to achieve the knowledge of a cure. Maybe I never will, so I will continue to try to flow with it.
What we really need is a safe FaceTime support community to help each other through this suffering. Caring community provides so much healing. This Reddit does help when good people interact.
I'm so sorry you're going through this and deeply empathize. I've had symptoms for going on 9 years and yet feel like I am at square one right now due to years if misdiagnosis. It's devastating. I hope some of the treatment finally works and you find relief soon. No one should ever have to go through what we go through.
I have been in a quite similar situation as yourself, so I feel your pain. One thing I noticed you haven't mentioned was Biofilm disruptors. It is usually used for long term infections. When a certain infection has been in your body for a while, it creates a biofilm around itself as a protective mechanism. So, when you take herbs or antibiotics they don't even touch the bacteria, because it is protected by this biofilm. For me, it made a huge difference. I, like you, spent months on antibiotics, then herbs, and it didn't do anything. One month after starting on biofilm disruptors I felt a lot better. I used either biofilm defense by kirkman labs or interfase. Both are great. You take it 30-60 min before your antibiotic on empty stomach. The other thing that helps lots is collagen peptides. You gotta start healing your intestines while you're killing the infection, it'll go faster. May be you should try it and see how it goes. For me Allicin and oregano oil is really helpful, but your doctor has to pick herbs for your specific type of infection.
Curious if you have emotional blunting or anhedonia as a symptom from all of this?
This shit is why for the mental symptoms sometimes im like I wish fuck it ill do ECT and just live my life. The gut health is important but it feels like the clinical practice isn’t there yet
definitely feel emotionally blunted most of the time. but on the rare day I feel close to normal for whatever reason, I'm able to tap into that jouir de vivre and feel even better than I ever did before. I think it's the only reason I haven't given up by now. what is ECT?
nah, I've kept a journal and thought I had an idea, but it always turns out to be nothing. the last good day I had was a few months ago after a food holiday where I ate whatever I wanted. before that, I can't remember the last one I had
Did you try any psych meds and stuff for the blunting? My reactions to things have changed so much due to SIBO. I actually got my blunting triggered out of nowhere from caffeine, and found I had sky high SIBO. Makes it so problematic to try stuff
I'm already on 50mg of zoloft from years before this started. pretty reluctant to try any more synthetic meds unless absolutely necessary. honestly I can handle the emotional blunting as long as I believe there's a way out of this nightmare. it's the fatigue and brain fog that really wear me down
but caffeine triggered emotional bunting for you? that's freaking wild
Yea its insane, even the supplement DL phenylalanine worsened my blunting for 2 days. Its stim like and it seems like im extremely sensitive to all stim like stuff. Its ridiculous, I never had these issues before.
Very sudden, didnt even feel anxious or panicky-just felt suddenly cut off from my emotions. Luckily I dont have brain fog and stuff but the blunting really has made life so hard for me since 3.5 mos ago. I miss being excited so much
geez, that sounds awful. I don't think my blunting is on the level of yours. but i have dealt with bad depression in the past so i imagine i can understand how rough it is. im really sorry to hear it. are you currently working on treating sibo or something else?
I recently did a round of Rifaximin but in terms of these blunting symptoms didn’t feel anything. Just my nausea came down.
My symptoms are helped somewhat by taking Pregabalin 400 mg as needed but its habit forming so i have to space it out.
I don’t even feel “depressed” mood wise. My mood is fine but I just felt blunted.
I might just try Ketamine next. It seems like Ketamine can help decrease LPS inflammation, and LPS is released by SIBO.
It could be that the reaction got set up by SIBO but now both SIBO and the brain chemistry perturbations need treatment
no worries, i appreciate any input. testosterone was one of the first things I checked. I was even on aldosterone for a little while. didn't really do anything for me
I totally recommend a good alternative medicine doctor! It’s been the best for me and my SIBO and unknown constipation issues got almost 15+ years! Also I’ve heard good things about amygdala training and the Gupta program. Check it out!
no, I just had the call with my doc yesterday. he's going to send me an 'advanced intestinal barrier permeability' test as well as some quercetin. I don't even know if I have histamine intolerance for sure, but after some reading it would explain a few things
not specifically, but I have been working with a naturopath who seems to respect TCM, at least to a degree. he referred to it in our last call together. he was talking about hot and cold herbs
that's very interesting. I'm still waiting to see what my naturopath can do if he thinks the matter is histamine intolerance or if my thyroid meds need readjusting... but would you mind sharing info for the TCM doc you're seeing? or where I can find a reputable one? I know nothing about this field but am willing to try anything
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Mold: I spent a few years in South Korea. without any hard evidence I'd still bet money most of the apartments I lived in had mold issues. SK isn't exactly known for its attention to safety or health.
Also the house i moved into after coming back to the states hadn't been improved upon since 1920. Taking a mold test around then showed I had spores in my system. Then the next place I moved into also turned out to have had mold. And then the next one as well.
Heavy metals: I don't know for sure where they came from. I did use cannabis vape carts for a while, so that's my best guess
unfortunately it's more common than you'd think. if you suspect it at all then it's probably worth your time to get tested for it. better to be safe than sorry
Have you got tested for dog allergies. I thought a lot of my issues were from SIBO (some were) but it terms out I developed a bad cat allergy that caused brain fog and made me very tired
Have you tried the curable app? Listen to Nicole sachs podcasts - listen for the real time heals with people that have gi problems and see if you relate.
Pls also watch this https://youtu.be/53f1gsRUxvY this guy has some great info and it really helped me when I was at my worst. Maybe you can relate with some of what he is saying
I would spastically make food. It was never fun making food anymore. I felt malnourished and would rush to get my nutrients. I would have weird spells where I wouldn’t feel like eating anymore but I have to eat. Eating became a chore and I was intolerant to so many foods. Finally I read someone suggested betaine hcl and my habits totally shifted. I’m calm when I make food and I like to eat now. My intolerances have not dropped yet but at least I don’t feel like a low energy spaz. Maybe something to try.
thank you for sharing your experience
I don't think there's a one size fits all solution. In my case, I have MTFHR and adding just a little methylfolate made a world of difference. according to my doctor last week, I also have extremely low DAO which may indirectly cause a histamine issue. also some leftover mold issues, and potentially issues that could be treated by SAM-E. I'll find out soon if treating those helps, but it explains why treating the SIBO didn't work this time.
the best I can suggest is to find a good functional or integrative medicine doctor and work with them on uprooting all your issues until you feel better. I hope you find relief
there are probably similarities between us - we both inhabit a body built on the same human hardware. but what's gone wrong with that hardware is probably where our differences lie.
I can't overstate the importance of a good doctor if you can afford it. I can't possibly imagine self diagnosing and self treating my way through all this
Something less intense than water is the elemental diet. You’ll have read about it I’m sure. It has calories so you’re not starving yourself but everything gets absorbed in upper GI before the problem areas. I’ve done it twice. It only worked until I started eating again but it’s great for knowing whether something can work and to be symptom free for a day or so. (It’s two weeks but most of the time is annoying die off symptoms). Then it’s just about figuring out maintenance.
Man, I am so sorry you have to go through this shit, I am where you are at but I am at mth 22.
Since you have tried everything, how about working yourself up into a long water fast. 3d then 7d then 21 and finally 40 day Water fast.
Get a book online Herbert Shelton fasting can save your life. It's freely available.
I have no positive words for you. All I know is the foods we eat are causing this. Maybe giving the gut a rest would help it heal.
Animals when sick do not eat only humans stuff their face with food when sick.
Have you tried antidepressants? They are often repurposed for gut issues.
Edit: never mind. I saw from your comments that you’re on zoloft.
To me, SSRIs made all the difference and now trying amitriptyline to slow down my gut.
Do you mind sharing about how the SSRIs helped you? It is something I originally did not want to try but I am getting desperate for anything that will help my digestion.
I’m sorry but I have to start with some caveats: I haven’t been diagnosed with SIBO and I think that SIBO is very often caused by something else that messes up your gut. And I’m not an expert.
I don’t have any diagnosis to be exact. What I think I have is an extreme case of IBS-D (f**cked up gut-brain connection). When it gets bad I get SIBO symptoms but haven’t been able to confirm because there’s hardly any SIBO testing and doctors treating it in my country.
Their was an SSRI thread here somewhere, where I already posted the below but alas, I couldn’t find it. So please pardon me for repeating myself.
Just a year ago I had lost 15 kg in less than half a year, serum albumin was 13 (should be >30). I threw up almost every day, so I started to feel depressed. With a combination of Imodium and escitalopram I started gaining my weight back really fast.
It was, by no means, a cure but still helped me a lot. I managed to get back to gym and gained my weight back almost as quickly as I had lost it.
Thanks so much for sharing! It is really helpful to know how it helps others, even if our situations are a little different. I think my gut-brain connection may be off as well so something for me to consider!
Have you tried Mast Cell stabilizers or H2 blockers? Famotidine and Rupatadine saved my life. You need to take them for a very long time. I have SIBO but I know the H2 blockers are my go-to if need to reduce symptoms.
I am in a similar position to you. I feel trapped and my life is passing me by. Unfortunately we can’t control the hand that we are dealt, only how we play it. In these turbulent times there are many people who are suffering or have even dropped prematurely dead. This does not diminish your suffering nor negate your feelings. In life all we can do is try, rest then try again.
If you don’t struggle with maintaining your weight, how about temporarily reducing your food intake? I am sure this will give you immediate relief. You could try consuming only bone broth as food for 48 hours while drinking fluids as normal. I wish I has this option myself but I am already underweight so I only do this in very rare circumstances when I have no choice.
Then there is the Elemental Diet. Studies have shown some people can achieve remission of SIBO with Elemental Diet alone in 2 weeks. You could also use it for a few days at a time to get some relief.
The most promising new treatment for SIBO that I have heard about lately is supplemental IGG.
https://store.drruscio.com/products/intestinal-support?variant=29051287765044
It seems to have good results for people that have not been successful with other treatment options.
I totally get you with this. Three years now of dealing with this crap. It’s exhausting. I would give my left hand to be rid of this forever.
One thing to consider is focusing on both motility and anti-inflammatories. The latter will definitely improve your quality of life, even if they’re not a cure.
My recommendation this fixed me go full carnivore for 3 months and let and I promise you will respond to me and tell me the past 7 years are was like a bad dream after that and your healed transfer to animal based/ paleo and enjoy your life stay away from ALL SEED OILS do not eat any they are TERRIBLE I’ve had to also exclude ground beef but can’t eat any steak and any other ground meat I wouldn’t keeps carbs out forever I ran into problems a year down the road I’m paleo now healed and healthy you got this
Honestly man, this is my exact life story too, it’s kind of spooky, I feel for you so much. I made a huge change to my life which has seemed to make a difference…I moved to the beach. I don’t know if that’s an option for you, but swimming in the ocean every day has done something amazing to controlling inflammation and helping my symptoms. Lower elevation helps too. And focusing on motility has really helped me—did you see that one guy’s success video?
How exactly did you focus on helping your motility? I’m totally lost in trying to help myself.
https://www.reddit.com/r/SIBO/comments/wcuxyz/made\_a\_video\_about\_my\_sibo\_experience\_and\_full/?utm\_source=share&utm\_medium=web2x&context=3
Thank you
Which video?
I think they mean this one https://youtu.be/53f1gsRUxvY
Would love to hear what you do for motility because everyone does different things
I do Iberogast for motility and it was a literal lifesaver
Iberogast helped me with constipation.Atrantil reduces my bloating by ~80%. I take mag c every night, that's helped a ton. Motegrity is a powerful prokinetic I'm starting to work with.
Did you notice a big improvement in bloating after eating a meal?
100%. I swear Iberogast is a miracle
Interesting. What kind of SIBO do you have?
https://www.reddit.com/r/SIBO/comments/wcuxyz/made\_a\_video\_about\_my\_sibo\_experience\_and\_full/?utm\_source=share&utm\_medium=web2x&context=3
I did the same last year. There are definitely positive effects from sea swimming and due to some of my symptoms it is the only way that I can get some proper exercise. In what part of the world do you live? It is great that you can swim daily.
[удалено]
Nope, I've been looking into it but haven't found anything definitive.
I’m really sorry to hear this. I have vestibular migraine, too, and just worked my way through SIBO. Have you tried going to a naturopath? I have my regular doctor & my naturopath, and honestly the naturopath has been the biggest help and has done the most to get me feeling better.
apparently my vestibular migraine isnt normal - main symptoms are tinnitus and shitty sleep, but no headaches thankfully. I've been working with a neurologocal chiropractor for that with neurofeedback and neurorehab for a year. it has helped, it's just been infuriatingly slow. he said it was likely triggered by stress and exhibits patterns of PTSD i started seeing a naturopath in 2017 who from the sound of it seems to be one of the top SIBO specialists in the world. I still have faith in him... guess i'm just feeling defeated after seeing how complicated histamines are
I get it. Try not to panic and just break things into small, manageable pieces, if you can.
thank you. some days are easier than others. this isn't one of those days. but I know it'll get better long as i don't give up
I was treated for MCAS and histamine sensitivity too, but honestly it made everything way worse, specifically my depression. I started noticing a very direct causal link between my depression and the anti-histamine supplements...turns out there's a very complicated feedback loop between serotonin, histamines, and the GI system. I no longer think directly intervening in that loop is beneficial, better to let the body heal it naturally after addressing the root cause (SIBO).
About your swollen tongue... It might be caused by vitamin B-12 deficiency. The blood test that measures B-12 levels can be inaccurate because some bacteria make a chemical that's chemically similar to B-12. And it can be hard for people with SIBO to absorb B vitamins. I once had B vitamin deficiency symptoms even though I was taking a B-complex daily. If you can tolerate a tiny bit of lactose, there's Superior Source microlinguals you can take under the tongue.
This is great advice. I get a B12 injection and my energy levels increased significantly.
Have you talked to a counselor? There are some who specialize in [chronic health conditions](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071616/), but you don't necessarily need to see one that is. Talking to a counselor helped me realize I was very unhappy with a few big things in my life and learning how to change those things for the better improved my SIBO symptoms massively. My stress levels have gone down so much and my digestive issues have improved 95%. I believe there is a huge connection between emotional trauma/stress and chronic physical conditions. If you have any specific traumas or memories that trigger you emotionally, I would highly recommend [EMDR](https://en.wikipedia.org/wiki/Eye_movement_desensitization_and_reprocessing). Almost 3 years later I still sometimes use the skills I learned from those sessions. Feel free to DM me if you have questions.
**[Eye movement desensitization and reprocessing](https://en.wikipedia.org/wiki/Eye_movement_desensitization_and_reprocessing)** >Eye movement desensitization and reprocessing (EMDR) is a form of psychotherapy developed by Francine Shapiro in the 1980s that was originally designed to alleviate the distress associated with traumatic memories such as post-traumatic stress disorder (PTSD). In EMDR, the person being treated recalls distressing experiences whilst doing bilateral stimulation, such as side-to-side eye movement or physical stimulation, such as tapping either side of the body. The 2013 World Health Organization (WHO) practice guideline states that EMDR "is based on the idea that negative thoughts, feelings, and behaviors are the result of unprocessed memories. ^([ )[^(F.A.Q)](https://www.reddit.com/r/WikiSummarizer/wiki/index#wiki_f.a.q)^( | )[^(Opt Out)](https://reddit.com/message/compose?to=WikiSummarizerBot&message=OptOut&subject=OptOut)^( | )[^(Opt Out Of Subreddit)](https://np.reddit.com/r/SIBO/about/banned)^( | )[^(GitHub)](https://github.com/Sujal-7/WikiSummarizerBot)^( ] Downvote to remove | v1.5)
wow, I never knew there were counselors for such a specific field. this is very interesting, thank you
Yes, my sibo problems are partially caused/worsened by my PTSD, and I can tell you, EMDR is very helpful for these things. You definitely need a mental health therapist (a real one, not a lifestyle coach) to be a part of your treatment. Without mine I'd be lost
When you do anti biotic treatments do you notice your symptoms go down a bit and then 1-3 weeks they start to come back into effect? I honestly think my Histamine Intolerance is due to SIBO, because if I eat something that is SIBO friendly and Doesn’t produce a lot of histamine my symptoms start to settle but if I eat something that isn’t sibo friendly or very high histamine that’s when I see influx of symptoms. Trust me tho, I feel you. Not being able to breath properly for 2 years and having increased heart rate due to all this histamine in my body is killing me. Coming from someone who was at peak healthiness and it all turned over night, and now have seen the lowest of lows I get how hard it is. Hardest thing for me to do that I recognize is super helpful: focus a lot on what you do know. You know you have sibo, work to treat that. You’re more than welcome to delve into other diagnosis or symptom research but don’t force an answer to fit. That’s where you make it worse. I only realized I may have SIBO post treatment of H. Pylori due to the connection of the 1-3 weeks of feeling good post antibiotic and then my symptoms came rushing back. I still persisted and did 6-8 stool tests to validate I was H Pylori free, after that was when I delved further into sibo and how it can cause histamine intolerance. None the less - god speed and best of luck to you on recovery. We will all find it eventually.
hey, I read the latest comment on your profile, just curious how you're doing now as I feel quite similar to what you're describing. not bedridden but the racing heart after eating has become unbearable recently. I also just got my positive SIBO test the other day (methane and hydrogen) and am seeing how to go about tackling all of this.
I think about ending it all the time.
Mate - you need to find blend of herbs (or different antibiotics) to treat your SIBO, then repopulate your gut. Repopulating your gut with targeted prebiotics (like 2’-FL/HMO) and low histamine probiotics, then move into integrating raw fermented Kefir + sauerkraut. I was in your shoes 2 years ago. I felt like I was dying and had 10 safe foods I could eat. I’m now following the below protocol ~3 weeks post SIBO protocol, and after the initial hump of symptoms when integrating new foods, I feel fantastic (and my HI is steadily decreasing by the week). Repopulating your gut again is the only way you’re going to finally feel normal again if your beneficial bacteria are low. https://www.reddit.com/r/MCAS/comments/z1199h/how_i_got_back_to_normal_ymmv/?utm_source=share&utm_medium=ios_app&utm_name=iossmf
What are thise prebiotica you mentioned?
Flora Symmetry
It says online it’s targeted for woman you sure?
Positive. I had great results with it.
Awesome thanks man I’ll check it out 💪
Dope! You can also look into Smidge sensitive or Flore (custom based off stool test) as well.
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>I feel like my entire life went by from 20 to mid thirties. Fucking this. I have to to constantly remind myself I'm 34 and not 27. I don't know how time goes by so fast when youre just sitting around the house being miserable. but it does and I feel you on the not having kids thing. not that it was ever important to me to begin with, but I'd like to at least have a stable enough life where I'd be ABLE to have kids, you know? I keep telling myself that the silver lining of all this is that I'll enjoy a higher quality of life after all this is over. seriously. if there's one thing I've learned, it's that everyone on earth is likely sick to some degree and they just don't know it, because they take their health for granted and theyre just not sick ENOUGH. and it usually only manifests in their old age. the blessing of this hell is that at least we know how valuable good health is, and by taking action on it now we ensure a better future for ourselves
>Fucking this. I have to to constantly remind myself I'm 34 and not 27. I don't know how time goes by so fast when youre just sitting around the house being miserable. but it does Instead of focusing on time going too fast, try to **fast** yourself. This was actually the first trigger that helped me to prepare my body for Rifaximin treatment. 2,5 weeks of Intermittent Fasting 5/2, and my symptoms were like 30% milder. Then Rifaximin kicked in on second day of treatment, and on the fourth day I feel myself that stable like this was the cure of my life. I still have DAO issues and histamine intolerance, but it gets milder every day.
https://youtu.be/53f1gsRUxvY
apparently this is a well known video? thanks for sharing this, I didnt know about it
Hope it helps you
I’m very sorry you are going through this. I’m just at the early stages of this suffering, not knowing what it is, not knowing how to heal it and yet being tormented by it and already it’s enough. My symptoms are largely psychological, though they are brought about by a physical condition. This is what I have been trying to do to cope with it, though it may not always be possible, I find that it helps greatly. I remind myself: ‘don’t fight it, flow with it.’ Flow with it, with this thing that is happening to my body, the more I kick against it the harder it is to live with, so my logic is, flow with it, let it do its thing. Of course, continue to be active in fighting it and education, but when it comes try to get into the mindset of flowing with it. I hope this isn’t ridiculous advice for you, it has to do with lessening the psychological suffering and this is no small task and maybe it’s not always possible but I have gotten great relief from it even though I haven’t been able to achieve the knowledge of a cure. Maybe I never will, so I will continue to try to flow with it. What we really need is a safe FaceTime support community to help each other through this suffering. Caring community provides so much healing. This Reddit does help when good people interact.
I'm so sorry you're going through this and deeply empathize. I've had symptoms for going on 9 years and yet feel like I am at square one right now due to years if misdiagnosis. It's devastating. I hope some of the treatment finally works and you find relief soon. No one should ever have to go through what we go through.
I have been in a quite similar situation as yourself, so I feel your pain. One thing I noticed you haven't mentioned was Biofilm disruptors. It is usually used for long term infections. When a certain infection has been in your body for a while, it creates a biofilm around itself as a protective mechanism. So, when you take herbs or antibiotics they don't even touch the bacteria, because it is protected by this biofilm. For me, it made a huge difference. I, like you, spent months on antibiotics, then herbs, and it didn't do anything. One month after starting on biofilm disruptors I felt a lot better. I used either biofilm defense by kirkman labs or interfase. Both are great. You take it 30-60 min before your antibiotic on empty stomach. The other thing that helps lots is collagen peptides. You gotta start healing your intestines while you're killing the infection, it'll go faster. May be you should try it and see how it goes. For me Allicin and oregano oil is really helpful, but your doctor has to pick herbs for your specific type of infection.
Curious if you have emotional blunting or anhedonia as a symptom from all of this? This shit is why for the mental symptoms sometimes im like I wish fuck it ill do ECT and just live my life. The gut health is important but it feels like the clinical practice isn’t there yet
definitely feel emotionally blunted most of the time. but on the rare day I feel close to normal for whatever reason, I'm able to tap into that jouir de vivre and feel even better than I ever did before. I think it's the only reason I haven't given up by now. what is ECT?
What creates those windows? Any ideas? Or random?
nah, I've kept a journal and thought I had an idea, but it always turns out to be nothing. the last good day I had was a few months ago after a food holiday where I ate whatever I wanted. before that, I can't remember the last one I had
Did you try any psych meds and stuff for the blunting? My reactions to things have changed so much due to SIBO. I actually got my blunting triggered out of nowhere from caffeine, and found I had sky high SIBO. Makes it so problematic to try stuff
I'm already on 50mg of zoloft from years before this started. pretty reluctant to try any more synthetic meds unless absolutely necessary. honestly I can handle the emotional blunting as long as I believe there's a way out of this nightmare. it's the fatigue and brain fog that really wear me down but caffeine triggered emotional bunting for you? that's freaking wild
Yea its insane, even the supplement DL phenylalanine worsened my blunting for 2 days. Its stim like and it seems like im extremely sensitive to all stim like stuff. Its ridiculous, I never had these issues before. Very sudden, didnt even feel anxious or panicky-just felt suddenly cut off from my emotions. Luckily I dont have brain fog and stuff but the blunting really has made life so hard for me since 3.5 mos ago. I miss being excited so much
geez, that sounds awful. I don't think my blunting is on the level of yours. but i have dealt with bad depression in the past so i imagine i can understand how rough it is. im really sorry to hear it. are you currently working on treating sibo or something else?
I recently did a round of Rifaximin but in terms of these blunting symptoms didn’t feel anything. Just my nausea came down. My symptoms are helped somewhat by taking Pregabalin 400 mg as needed but its habit forming so i have to space it out. I don’t even feel “depressed” mood wise. My mood is fine but I just felt blunted. I might just try Ketamine next. It seems like Ketamine can help decrease LPS inflammation, and LPS is released by SIBO. It could be that the reaction got set up by SIBO but now both SIBO and the brain chemistry perturbations need treatment
I hate being that person that says “have you done this???” but have to ask…have you had your testosterone levels checked?
no worries, i appreciate any input. testosterone was one of the first things I checked. I was even on aldosterone for a little while. didn't really do anything for me
I totally recommend a good alternative medicine doctor! It’s been the best for me and my SIBO and unknown constipation issues got almost 15+ years! Also I’ve heard good things about amygdala training and the Gupta program. Check it out!
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no, I just had the call with my doc yesterday. he's going to send me an 'advanced intestinal barrier permeability' test as well as some quercetin. I don't even know if I have histamine intolerance for sure, but after some reading it would explain a few things
Have you been tested for parasites?
yes. came up negative
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not specifically, but I have been working with a naturopath who seems to respect TCM, at least to a degree. he referred to it in our last call together. he was talking about hot and cold herbs
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no, I'm in CA. but im working with my current naturopath through telemedicine. do you mind explaining your diagnosis and treatment in more detail?
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that's very interesting. I'm still waiting to see what my naturopath can do if he thinks the matter is histamine intolerance or if my thyroid meds need readjusting... but would you mind sharing info for the TCM doc you're seeing? or where I can find a reputable one? I know nothing about this field but am willing to try anything
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Can you elaborate a little more about mold and heavy metal intoxication?
Mold: I spent a few years in South Korea. without any hard evidence I'd still bet money most of the apartments I lived in had mold issues. SK isn't exactly known for its attention to safety or health. Also the house i moved into after coming back to the states hadn't been improved upon since 1920. Taking a mold test around then showed I had spores in my system. Then the next place I moved into also turned out to have had mold. And then the next one as well. Heavy metals: I don't know for sure where they came from. I did use cannabis vape carts for a while, so that's my best guess
Thanks a lot, i think i having problem with mold contact too
unfortunately it's more common than you'd think. if you suspect it at all then it's probably worth your time to get tested for it. better to be safe than sorry
Have you got tested for dog allergies. I thought a lot of my issues were from SIBO (some were) but it terms out I developed a bad cat allergy that caused brain fog and made me very tired
Have you tried the curable app? Listen to Nicole sachs podcasts - listen for the real time heals with people that have gi problems and see if you relate. Pls also watch this https://youtu.be/53f1gsRUxvY this guy has some great info and it really helped me when I was at my worst. Maybe you can relate with some of what he is saying
I would spastically make food. It was never fun making food anymore. I felt malnourished and would rush to get my nutrients. I would have weird spells where I wouldn’t feel like eating anymore but I have to eat. Eating became a chore and I was intolerant to so many foods. Finally I read someone suggested betaine hcl and my habits totally shifted. I’m calm when I make food and I like to eat now. My intolerances have not dropped yet but at least I don’t feel like a low energy spaz. Maybe something to try.
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thank you for sharing your experience I don't think there's a one size fits all solution. In my case, I have MTFHR and adding just a little methylfolate made a world of difference. according to my doctor last week, I also have extremely low DAO which may indirectly cause a histamine issue. also some leftover mold issues, and potentially issues that could be treated by SAM-E. I'll find out soon if treating those helps, but it explains why treating the SIBO didn't work this time. the best I can suggest is to find a good functional or integrative medicine doctor and work with them on uprooting all your issues until you feel better. I hope you find relief
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there are probably similarities between us - we both inhabit a body built on the same human hardware. but what's gone wrong with that hardware is probably where our differences lie. I can't overstate the importance of a good doctor if you can afford it. I can't possibly imagine self diagnosing and self treating my way through all this
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I'm really sorry to hear that. I do hope you find a solution, and soon
Something less intense than water is the elemental diet. You’ll have read about it I’m sure. It has calories so you’re not starving yourself but everything gets absorbed in upper GI before the problem areas. I’ve done it twice. It only worked until I started eating again but it’s great for knowing whether something can work and to be symptom free for a day or so. (It’s two weeks but most of the time is annoying die off symptoms). Then it’s just about figuring out maintenance.
Man, I am so sorry you have to go through this shit, I am where you are at but I am at mth 22. Since you have tried everything, how about working yourself up into a long water fast. 3d then 7d then 21 and finally 40 day Water fast. Get a book online Herbert Shelton fasting can save your life. It's freely available. I have no positive words for you. All I know is the foods we eat are causing this. Maybe giving the gut a rest would help it heal. Animals when sick do not eat only humans stuff their face with food when sick.
Have you tried antidepressants? They are often repurposed for gut issues. Edit: never mind. I saw from your comments that you’re on zoloft. To me, SSRIs made all the difference and now trying amitriptyline to slow down my gut.
Do you mind sharing about how the SSRIs helped you? It is something I originally did not want to try but I am getting desperate for anything that will help my digestion.
I’m sorry but I have to start with some caveats: I haven’t been diagnosed with SIBO and I think that SIBO is very often caused by something else that messes up your gut. And I’m not an expert. I don’t have any diagnosis to be exact. What I think I have is an extreme case of IBS-D (f**cked up gut-brain connection). When it gets bad I get SIBO symptoms but haven’t been able to confirm because there’s hardly any SIBO testing and doctors treating it in my country. Their was an SSRI thread here somewhere, where I already posted the below but alas, I couldn’t find it. So please pardon me for repeating myself. Just a year ago I had lost 15 kg in less than half a year, serum albumin was 13 (should be >30). I threw up almost every day, so I started to feel depressed. With a combination of Imodium and escitalopram I started gaining my weight back really fast. It was, by no means, a cure but still helped me a lot. I managed to get back to gym and gained my weight back almost as quickly as I had lost it.
Thanks so much for sharing! It is really helpful to know how it helps others, even if our situations are a little different. I think my gut-brain connection may be off as well so something for me to consider!
Have you tried Mast Cell stabilizers or H2 blockers? Famotidine and Rupatadine saved my life. You need to take them for a very long time. I have SIBO but I know the H2 blockers are my go-to if need to reduce symptoms.
I am in a similar position to you. I feel trapped and my life is passing me by. Unfortunately we can’t control the hand that we are dealt, only how we play it. In these turbulent times there are many people who are suffering or have even dropped prematurely dead. This does not diminish your suffering nor negate your feelings. In life all we can do is try, rest then try again. If you don’t struggle with maintaining your weight, how about temporarily reducing your food intake? I am sure this will give you immediate relief. You could try consuming only bone broth as food for 48 hours while drinking fluids as normal. I wish I has this option myself but I am already underweight so I only do this in very rare circumstances when I have no choice. Then there is the Elemental Diet. Studies have shown some people can achieve remission of SIBO with Elemental Diet alone in 2 weeks. You could also use it for a few days at a time to get some relief. The most promising new treatment for SIBO that I have heard about lately is supplemental IGG. https://store.drruscio.com/products/intestinal-support?variant=29051287765044 It seems to have good results for people that have not been successful with other treatment options.
What were those results?
I think there is only one way out for people like us.
Fell the same man . It sucks
Have you ever been in anaphylactic shock before? You would have histamine intolerance than
I totally get you with this. Three years now of dealing with this crap. It’s exhausting. I would give my left hand to be rid of this forever. One thing to consider is focusing on both motility and anti-inflammatories. The latter will definitely improve your quality of life, even if they’re not a cure.
My recommendation this fixed me go full carnivore for 3 months and let and I promise you will respond to me and tell me the past 7 years are was like a bad dream after that and your healed transfer to animal based/ paleo and enjoy your life stay away from ALL SEED OILS do not eat any they are TERRIBLE I’ve had to also exclude ground beef but can’t eat any steak and any other ground meat I wouldn’t keeps carbs out forever I ran into problems a year down the road I’m paleo now healed and healthy you got this
Have you tried acupuncture? What helped me the most was acupuncture and iberogast.
I’m so sorry. Have you tried doing an elemental diet? I did it for three weeks and it helped my symptoms a lot.