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cameronfrye666 · 3 months ago

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How I Unf*cked Myself (a digestive health story)

TLDR (yes a very long TLDR, but this post is proportionally long)

Chronically fatigued and sick as a kid

Repeated courses of antibiotics (probably 20+) and 2x Epstein-barr infection between age 8 and 17

Around age 18 started noticing really weird food intolerances

Couldn’t drink alcohol without insane hangovers lasting 2 weeks+

Couldn’t consume foods high in refined sugar without going into days-to-weeks long episodes of hyperactivity, insomnia & extreme stress

Felt relatively shit eating most carbs

Tried fixing with diet change and vitamin / mineral supplements. Helped some symptoms but didn’t fix the issue.

Tried fixing with various probiotics. Incredibly mixed results - eventually found a regimen that worked for a period of time but, again, didn’t fix the issue.

After a hellish reaction to prebiotic fibre supplements, consulted a gastroenterologist and was diagnosed with Small Intestinal Bacterial Overgrowth, Gut Dysbiosis and an active H. Pylori Infection. Significant Improvement of symptoms following:

10x 14 days Rifaximin (550 mg 3x daily)

H. Pylori Eradication Regimen (one week amoxicillin, clarythromycin, metrodinazole and omeprazole)

2 years of:

Keto / SCD Diet

Either Candibactin AR&BR, FC-Cidal, Dysbiocide & ADP supplements, or Allimed Neem & Cinnamon, alternating every 2 months between them (two caps of each product 3x daily).

Occasional use of natural motility agents depending on symptoms (ginger / artichoke formulations and iberogast).

This whole process sucked beyond description, if you have gut / digestive issues it is probably affecting your general health & wellbeing more than you realize.

Intro

I don’t really have anything left to say other than that it was a more painful experience than I think I could ever accurately describe. Gut health seems to be one of the last remaining big frontiers of human health, and I hope they figure it out so no one has to experience this again. I am still moderately lost in the issue but it has at least gotten a lot better recently.

Story

The Descent

February 4th 2012 is a day that I will likely never forget for the rest of my life. I woke up from a relatively short and disrupted sleep around 10am. A close friend of mine who had slept over the night before was sitting on the living room couch watching The Social Network with my dad. It seemed a sensible, logical thing to join them. So I sat down on the couch, and all of a sudden, I couldn’t. It's hard to explain exactly why I couldn't, but I just felt this immense inability to relax and settle down. Every bone in my body was vibrating, like this immense persistent energy rush.

I had also had a fair amount of red bull and other sugary soft drinks as mixer the night before, so I chalked this feeling up to a sugar / caffeine spike and decided to try and get on with the day. I had some breakfast, got showered etc., attempted to do some school work and participated in a family Sunday dinner. By about 10pm it began to become clear that this feeling of immense overpowering stress was not dissipating; if anything, it had gotten worse.

The next two weeks were an incredibly disorienting, painful and confusing experience. Rather than alleviate, the symptoms more or less persisted, although they would ebb and flow throughout the day. I started to notice that I felt the best first thing in the morning (important to note that "best" is a very relative term here) and worst from the late afternoon into evening, with a notable spike directly after dinner hour. I was living in a complete fog. I lost all emotional contact with the world around me. All I felt all day was this persistent restlessness and stress and a complete inability to get rid of it no matter what I did (showering, watching movies, lying down in bed etc.). I just felt like someone had mainlined adrenaline into one of my veins and wouldn’t turn off the tap. It is the most excruciatingly painful thing I have ever experienced, or think I am ever likely to experience. In some way, it is almost impossible to explain in normal words.

It was at the end of these two weeks that I finally decided to consult a doctor. Everyone here will likely be unsurprised to hear that he suggested I was suffering from a temporary bout of anxiety. Although I have certainly been anxious about my fair share of things in the past (studies, personal relationships etc.), I could feel that this was something quite different. On top of that, there was just nothing in my life bothering me at that time. I had great friends, had already been accepted to the University of my choice and was staring down the barrel of four months of school where my academic results didn’t matter anymore and then a three month summer break. I was offered some tranquilizers or anti-anxiety meds for my symptoms, but I wasn’t really interested in trying them as I wanted to get to the root of whatever the issue was.

The only other suggestion he had for me was to maybe take a look at my diet. He noticed I was twitching a lot and I offered that I had recently suffered some bad muscle cramps as well, so he suggested that after a bout of mononucleosis earlier in the year and a long winter with little sun, I may be deficient in a few things. He prescribed me a short course of magnesium and vitamin b-12 supplements and sent me on my way.

Over the next month, with the supplements only sort of helping and with me still watching my life essentially completely fall apart around me (barely able to attend school, permanently unwell, chronically stressed, insomniac etc., almost complete loss of social life) I consulted a few more doctors. They more or less all had the same response: you can try antidepressants and/or tranquilizers, but otherwise, sorry, we can't help you. A few also questioned the nutritional supplement prescription.

It was at this point that I started to feel I was more or less on my own in whatever this was.

Part II: Ascent #1

The three months following the initial onset of my symptoms were probably some of the worst of my life, which, considering everything I’ve experienced over the last decade+, is really saying something. I was in a completely emotionally disconnected state, basically felt only stress on a daily basis, and had no idea what was going on.

The only real nuggets of information I had that I trusted were that (i) it might be nutrition-related and (ii) caffeine and/or alcohol were clearly bad for me. I started doing a load of research into what causes nutritional deficiencies and imbalances, how to correct them, and what a healthy diet looks like. Prior to this I had been more or less unconcerned about what I ate or drank in a day, although my diet was reasonably healthy mostly just due to my mother's cooking.

My readings on diet led me to make a few changes. First, I changed from a magnesium oxide supplement to magnesium bisglycinate, for better absorption. Then, I switched to an entirely refined-sugar free, whole grain diet high in unprocessed meats and vegetables. Lastly, I started taking almost nightly electrolyte salt baths (either epsom salt or dead-sea salt).

Although none of these changes cured me by any means, very slowly, I started to feel somewhat better. I could feel moderate improvements on a daily basis. Some days were better than others, but overall things were on an upwards trend. From this point onwards I became almost completely convinced that my symptoms were the result of a nutritional imbalance and that I would cure them through diet and supplementation.

Then, something very strange happened, which, in retrospect, should have pointed me in the direction of my ultimate diagnosis. I went into hospital to have my tonsils removed (as mentioned I had been very sick as a kid), and when I came out later the next day I had a very strange level of emotional clarity. Somehow everything was less painful, and although the crazy stress symptoms weren't totally gone, the improvement in just 36 hours felt drastic. At the time I thought maybe it was painkillers I had been given, perhaps the IV drip they put me on post-op? In retrospect, it was most definitely the high-dose amoxicillin I had been taking since the operation for reasons I can explain later on.

Part III: Stasis #1

That summer things more or less stabilized. Nothing was ever quite as good as the days and week following the tonsillectomy, but the insane debilitating stress didn't come back either, so overall I couldn't complain. From a mental point-of-view I was sort of able to return to normal life other than having to watch my diet and avoid substance. I started university in the fall and was successful despite the obvious social constraints that came along with my new health regimen.

The years following this were pretty up and down. I was able to get through my university courses, have some semblance of a social life, and never returned to the manic stress state of my initial descent. That being said, I never felt "quite right" again. It is hard to place, but my health just still felt very poor. I had low energy, slept a lot, often felt quite irritable, and had very poor performance in sporting activities despite previously being a strong athlete.

The main salient point that came out of this period was that I started to notice that high-sugar foods could bring on shorter-term episodes that mimicked the time period of the original onset of my symptoms. In one instance, I almost failed a university exam after consuming a jelly-filled donut the day before and becoming almost literally incapable of processing information for a few days afterwards. Suffice to say, I completely cut sugar from my diet from this point onwards.

I also tried a few Myers' cocktail IV drips (basically a mix of magnesium, calcium and b-vitamins) during this time period as part of my thinking on the issue being caused by nutritional deficiency. I would feel pretty great for a few days following them (improved sleep, able to focus while studying, good energy for exercise) but then go back to my same poor-health state afterwards. This only compounded my belief that the issue was purely nutritional in nature. Alongside this I consulted some nutritionists and diet specialists, and they recommended me some further supplements and dietary changes, but none of it made that overwhelming of a difference compared to the changes I’d already made.

Part IV: Descent #2

For four years life went on in the position described above, at least from a health point-of-view. I had found a regimen that kept me functional and stable, and for the most part stuck to it and tried to forget about it all and get on with life. It was great to find some stability, but at the same time as an early twenty-something in University, having to stick to a pretty strict diet and lifestyle just wasn’t all that much fun.

So somehow I got the idea in my head that having found this stability, I must actually be cured of whatever it was and could go back to eating & drinking whatever I wanted. I got an 8-month research placement in France in 2016 and decided that I would just let loose and enjoy myself during that time. Upon arriving I quite quickly returned to being totally free with what I consumed, although perhaps still went light on very sugary foods. For the first few weeks, I felt great. I mean maybe not totally physical well, but it was just so mentally liberating to not think about this stuff anymore. I had a lot of fun going out with my new roommate, going on dates and just living life in a more free way.

Around the second month of being there I started to notice some chronic unwelness creeping back in. My sleep was starting to become quite poor, I had terrible focus at work and wasn’t accomplishing much, and would feel really unwell after most meals. I ignored it for a while.

By the third month, it was almost panic stations again. I don’t know why I didn’t react to this sooner, probably I was just trying to deny how bad it was getting again, but by mid-March (I had started worked in January), I was bordering on being physically non-functional again. I couldn’t do much other than spend most days in bed when I wasn’t at work, felt constantly agitated, was achieving essentially nothing on a daily basis (thankfully I was working in a French R&D centre where very little was happening at the best of times), and just felt constantly ill. It was not quite the return to the extreme stress of the first episode but I was still really unwell and uncomfortable most of the time.

I wasn’t really sure what to do, but I knew I really didn’t want to do another 6-months of diet control just to get back to a sort-of sufferable health state, so I started coming up with ideas for a quick fix. The only thing I really had was that those IV cocktails had made me feel pretty great, and since I was still in this mode of thinking it was all due to nutritional deficiency, I hoped that might be an easy solution (the logic being that alcohol and poor diet had lowered my micronutrient levels and I could just reverse it). It seemed this wasn’t available privately in Paris, so I went to London for the weekend just to get one.

What happened after that infusion is one part of this story that I still do not understand whatsoever. Within hours of getting the Myers drip, rather than feeling great, I felt catastrophically unwell. I did not sleep that whole night and for most of the rest of the weekend, and returned to Paris in a complete fog. The feeling persisted for some weeks. I have a few ideas of what it could have been - too much B-complex which can give you energy rushes, some kind of micronutrient overdose / toxicity since I was still taking lots of supplements on top of the IV at that time, or some kind of immune reaction - but really I don’t know. Suffice to say I never took one again.

Part V: Ascent #2

The terrible reaction to that IV drip started to put the idea in my head that maybe this whole thing wasn’t just related to nutrition and / or a micronutrient deficiency. So I started doing a lot of searching online about what else can affect digestion, intolerance to certain foods, and associated unexplained chronic health symptoms. The thing that kept on coming up was the gut microbiome. I had heard of probiotics before, and knew that yoghurt was supposed to help your digestion, but outside of that I was pretty uneducated. All I could really tell was that it might be worth a shot trying a probiotic supplement to see if it would help.

So, being me, I went online and found the strongest, highest-dose probiotic supplement I could find, or at least on amazon.fr . It was the Renew Life Ultimate Care probiotic with a dose of 200 Billion live cultures (I didn’t know about vivomixx and other 400Bn+ clinical products at the time). The night it arrived, I popped a dose and went to bed, and then another first thing in the morning. By the time I had eaten breakfast and arrived at work around 9am, I felt violently ill. I was sweating, had a pounding headache and felt like I was going to vomit at any moment. I managed to hold it together for the morning, barely managed to stomach lunch and then went home as soon as people started to leave (around 4pm).

I immediately went to google and started searching for what could cause this, and the main thing that came up was something called the Jarrisch-Herxheimmer reaction. I’m not sure what the clinical validation for this is, but the general understanding is that when something starts killing off pathogens in your body (which probiotics will do when they enter a pathogenic environment), they release toxins and inflammatory cytokines (can do a search yourself) into the body / bloodstream and you feel really unwell. Basically you are starting a fight between good & bad bacteria in your body and you feel the effects of it.

In some sense I was kind of excited that this had happened. The fact that I felt so violently unwell from taking probiotics perhaps pointed to the fact that I did have some kind of gut issue, which was a potentially useful revelation, although in the meantime I still felt horrendously ill. Most advice indicated that the reaction was temporary until you got “over the hump” but by day 7 I was still sick and things were only getting worse, so I stopped taking the pills altogether.

After looking into how I could manage this better, it seemed like low-dose pills or small amounts of probiotic foods could be a way to manage the reaction while still improving, and as there was a health food store on my street, I decided to start experimenting with Kefir. The first night just to see I drank 2 cups of the stuff and of course felt violently ill again. I then embarked on a months-long journey of upping my dose from just tea-spoons to being able to tolerate about 1/2 to 1 cup per night.

Within about six months I was able to dose freely with Kefir, and was eating other probiotic foods like sauerkraut and kimchi, all to positive effect. I managed to return to school following the end of my research placement, and although I still didn’t feel great, I would say I had made it back to another “stasis period”.

My next hypothesis for improvement was to switch from probiotic foods to a supplement again, although just because it was simpler to take than cups of kefir and / or plates of sauerkraut every night. I experimented with quite a few that I found online. I tolerated most of them that had a dose of 100Bn bacteria or less, although somehow still felt better eating the fermented food. Eventually, I tried the Renew Life Mood & Stress probiotic (no longer in production) because it had some strains that were clinically proven to reduce stress levels, which had been one of my main symptoms in bad periods, and it seems to work quite well. I wouldn’t say it completely changed how I felt on a daily basis but it kept me stable to the point that I could stop having to drink Kefir all the time and things felt mostly alright. I felt as if I had found the answer at least for a little while.

Part VI: Stasis #2

This period was the longest in this whole mess. For six years from 2016 to 2022 I just took my daily probiotic supplement, kept a fairly clean diet, and once again got on with life. In this time I graduated from University, moved cities within Canada, and then moved to London to found a start-up which I am still a director of (it has nothing to do with gut health). Until 2018 I would occasionally drink when social engagements came up, but I still always felt somewhat sick after. After feeling ill for almost two weeks after drinking heavily at a company Christmas party, I gave up alcohol entirely. I also never really returned to high-sugar foods for how unwell they had made me feel in the past and also just lack of need (I always found not drinking much more socially inhibiting that not eating deserts and the like).

It was in the spring of 2022 that, after 5-6 years of stasis, I once again became fed up with the whole thing. I was a young professional in my late twenties at this point and just didn’t understand why I had to take a probiotic supplement (of which I could only tolerate doses on the lower end) and eat a strict diet just to feel somewhat normal. I had considered longer-term solutions like getting a Fecal Microbiota Transplant to try and solve the issue once and for all, but most things like that were only offered privately, were expensive and the providers that did exist seemed a bit suspect (most FMT-type treatments are only available in clinical trials or for C-dificile infections at the moment).

Somewhere in here a nurse I spoke to at an FMT clinic I had called told me to try going keto and see if it helped. I did it and felt pretty awesome for four months but lost a ton of weight (I was already very skinny) and found it very hard to maintain (especially socially). I eventually gave it up returned to a whole-grain high-protein diet.

Part VII: Descent #3

After considering various options of how I reasonably could take action to improve my health and general life condition, I came up with the solution of finding a Nutritionist experienced in gut health issues. I had spent a lot of time avoiding medical professionals after my initial bad experiences with doctors and nutritionists either not being able to help or actually being actively unhelpful by questioning all of the symptoms and whether my reactions to foods were just psychosomatic, but I decided it was time to try again. I found a registered dietician in London who also had a PhD in gut microbiome research, which seemed like a great fit.

I shared my whole story with all of my symptoms and current condition, and although she had some questions about my sugar reaction and some of the weirder extended stress symptoms, she mostly accepted the story and that I clearly had some kind of untreated gut health issue. Her recommendation was that my diet was already positive (although could try introducing a few more carbs) and that the probiotic I was taking was as good as could be recommended by current knowledge in the field (noted that it is generally quite personal which ones work for some people and others not, and they don’t really know why).

In terms of path forward, she recommended that I try introducing some more prebiotic foods and potentially a prebiotic supplement. Going down the list of my daily diet, it was already quite prebiotic / fibre-heavy, so we decided to try a supplement. The idea is that the prebiotic fibre helps feed and grow more of the probiotics you are taking in the supplement, and will improve your gut health.

I started taking a daily dose (12g) of inulin, the best-validated prebiotic supplement available. The first few days I didn’t feel great and had pretty upset digestion, but nothing crazy. After about 3-4 days, I started having a reaction similar to the first time I ever tried high-dose probiotics. I felt pretty spaced out, generally ill, and hadn’t much appetite or desire for food. I interpreted this as being another Herxheimer reaction, so decided to stick with the supplementation. After about 1 month I still felt really unwell. Most days were a struggle to get through, I was in a total fog, and felt a lot of the extreme stress sensitivity of my initial low-points creeping back in. I spoke to the nutritionist and we decided that I would reduce my inulin dose or stop taking it all together. I reduced my dose by 1/2 and then by 1/3 but still felt increasingly unwell, so two weeks later stopped taking it all together.

The next month was very uncomfortable. I felt quite ill most days, had general nausea / feelings of disorientation, wasn’t really tolerating most foods, and wasn’t sure what was going on again. In a last ditch, I decided to stop taking all supplements (at this point just my daily probiotic). For about two weeks after stopping the probiotics I didn’t feel all that different, but then somewhere around 12-14 days in, things started to go seriously south. Day by day, or even hour by hour at one point, I started to feel things degrading at first back to the all-day stress symptoms I had in the very beginning of this whole journey, and then to a version like 100x worse than that.

At one point I didn’t sleep for almost five days. My heart was permanently bounding out of my chest, and I was just in excruciating pain every single minute of the waking hours. I had to quit my job for a period of time, and my life was otherwise completely turned upside down. Without going into too many specifics, as I have tried to focus at first on the health aspect here, this is also the closest I came to thinking that perhaps life had just not really worked out for me and it was time to consider giving up on it. For whatever reason I still don’t completely understand, I stuck with it and suffered through the worst.

The greatest intensity of these symptoms lasted for about a month. I went back on the keto diet just because I had felt well on it in the past and didn’t really know what else to do, and after 5-6 weeks I was able to return to work, although only part-time, and somewhat get a handle on my life. I still felt pretty unwell most of the time, and had become quite isolated personally and socially because of it, but at least it felt like the adrenaline tap had lowered a bit and I could mostly suffer through each day.

From a health-hypothesis point of view, I was a bit at wits end. I had contacted the nutritionist again and although she agreed the prebiotics can cause an adverse health reaction in some individuals for reasons not well understood, she didn’t really accept most of what I was saying around the extreme stress symptoms returning, and seemed a bit doubtful of me and what I was presenting. I decided that was about as far as we could continue together. Although I don’t deny I was in a terrible mental state at that time (which would be the case for anyone given the circumstances), I was completely convinced, and am unwavering to this day about the fact that the principal source of my issue was a serious, unadressed physical condition.

Part VIII: Ascent #3

All I felt I really had left was to go to a hospital and just accept whatever treatment they proposed (whether tranquilizers, sedation, some other drug or therapy I wasn’t aware of) or lay it all out for an experienced gastroenterologist / digestive specialist and just see what happened. I had often thought of seeking a specialist doctor, but was wary as pretty much all GPs and other doctors had been quite dismissive of my symptoms and assumed condition in the past. Here, however, we were quite literally in the “nothing to lose” position. With how things had gone the last months and my current life situation, I felt that if I didn’t fix this once and for all there was quite little point in continuing to live.

Luckily, I am at least somewhat a person of means, and in the UK there is quite an availability of private medical specialists who will see you for a cash fee. I went to one I had found from a private doctor review website who seemed to have some experience in chronic digestive and gut health issues. I explained to him this entire story, perhaps not quite in such detail and with such emotional weight around specifics of how bad it felt, but largely my reaction to certain foods, how I had tried to manage it over the years, and my current situation.

Firstly, he broadly accepted most of what I was saying, which was quite relieving in the first instance. His answer, although inconcrete, was that digestive health is, even for him and other experts, a very poorly understood area. He couldn’t say exactly why this was happening to me, but if I had the time and money he was willing to start looking into it with me and see if there were any potential solutions. For the first time, I felt as if an established member of the medical community was accepting their own blind spots in whatever this issue was , and willing to try and help.

His first suggestion was to run some tests to rule out more common and well-understood digestive disorders like Inflammatory Bowel Disease and Ulcerative Colitis. These all came back negative. Upon these results, he suggested that given my reaction to the prebiotic fibre and previous reaction to carbs and high-sugar foods, the most likely explanation was a chronic case of Small Intestinal Bacterial Overgrowth or SIBO. The way to diagnose would be a sugar or lactulose (another prebiotic) breath-test, and the treatment being a course of a choice of antibiotics to wipe out the overgrowth and try to correct the dysbiosis (gut microbiota imbalance).

I was quite open that I didn’t really feel comfortable trying a sugar or prebiotic-fuelled test at that time, given how precarious my health and life position was and my previous reaction to both of those substances. He suggested that since the point of the test is to see if either the sugar or lactulose cook up any bad bacteria and produce gas, and I had already shown a very negative anecdotal reaction to both with associated gas production, he was happy to just prescribe an empirical dose of the antibiotics.

This is now going back a bit, but as a child I was given a tremendous amount of antibiotics. I am fairly convinced that that is what caused all these issues for me, or was at least the main contributor. So naturally I was a bit wary of another doctor giving me more antibiotics, although I trusted this new one quite a lot. I eventually found online that there is some validation of natural antimicrobial and anti fungal substances being helpful in treating overgrowths and gut dysbiosis, so I decided to explore those options first. They are mostly all formulations of herbal oils and concentrates. It’s the sort of thing I would have been quite skeptical of before all of this started, but at this point I had had so many unexpected negative and positive reactions to different foods, supplements and treatments that I was more or less willing to try anything.

The best validated one is called Candibactin. It’s a combined treatment of mostly Oregano Oil and a Chinese Herb called berberine. I ordered some online and decided to give it a whirl. By my third dose, I was having an extremely intense version of what I experienced when I first took probiotics. Persistent headaches, sweating, lack of appetite, general unwellness and pain. It felt like an extremely intense flu and at some point I felt like I was spiking a fever. I chalked this up to the Herxheimmer reaction again and stuck with it. Once again, by about day 7, the symptoms were still extremely intense and I had to give up on the treatment. Interestingly, although I was in extreme discomfort, my digestion had normalized in this time (I will spare you the description). I didn’t really know what to make of this but it is interesting that the supplements had at least done something.

Following the experience on the herbal supplement which I had no desire to repeat for the moment, my symptoms somewhat stabilized although didn’t return to what they were prior to starting them. I wouldn’t say I felt notably better or worse but just “different”. I decided it was time to give the pharmaceuticals a go and see if I could tolerate them or if they were helpful in some other way, so I took a two week course of Rifaximin (the drug they give for SIBO). Being on Rifaximin was an extremely painful experience, but not quite as bad as the herbal supplements so I managed to push through it and by the end it had had quite a positive effect on me. I still didn’t feel great after the Rifaximin, and continued to work only part-time, but it had definitely done something.

Somewhere in here I also commissioned a microbiome stool test, which showed I had a quite significant dysbiosis (low levels of lactobacilli with almost undetectable levels of bifidobacterium, and a strong overgrowth of H2S-producing pathogens). It also showed I had an active H-Pylori infection and extremely poor absorption of fat and other macronutrients. Off the back of it the gastro prescribed me a triple-course of antibiotics to clear the H-Pylori and attributed the poor absorption to persistent SIBO. The triple-therapy for H. Pylori was a horrible experience and I actually ended up in hospital and was told to stop taking one of the drugs (Flagyl / Metronidazole) because it was giving me tinnitus, insomnia and general disorientation, which apparently can be a side effect, but the treatment otherwise worked.

After this latest course of antibiotics, I was, as before, not in a life-ending position, but my health was still quite bad. I was not accomplishing much at work, and I had essentially no social life. I decided something had to change, so I told my work I would take two months off after Christmas and do whatever I needed to do to solve this thing. The two remaining options I had before me were to try the herbal formulations again, or eat a completely liquid diet for 2-3 weeks to try and starve the pathogenic overgrowth (actually a clinically validated method of treating SIBO).

I first tried a fat-based version of the elemental diet first (most are sugar-based and I didn’t want to test that again), but it caused extremely painful stomach-burning feelings, which apparently can be caused by caprylic acid in the MCT oil it is primarily composed of, and I stopped after two days. After meditating on it for about five days I decided to just re-start the herbal formulations and endure whatever pain it caused me until this thing was hopefully cured.

So began two years of varied supplementation and antibiotics. I switched off the Candibactin formulation at one point to another called FC-cidal & Dysbiocide, as is recommended to avoid building resistance, although this is less common with the natural products, and also took multiple further courses of Rifaximin as things weren’t progressing as quickly as I’d hoped. The experience was painful but in different ways than it had been the first time around, and also took a lot longer than I expected, although I suppose after 10 years at it that shouldn’t have been surprising. I am not entirely sure why being on the herbals the second time around was less extreme than the first. I don’t know if they were less effective than at the first exposure, or that something about my situation had changed, but it was different in some way. It’s also worth noting that pretty much the whole time I was taking the herbal supplements & Rifaximin I stayed on a Keto or SCD diet (specific carbohydrate diet, basically no starches and reduced carb), although I’ve moved off this in recent months as I’ve started to feel better.

Part IX: Today

Something seems to have worked. I can’t point to it concretely or specifically, I am not a microbiologist or a gastroenterologist, but my life feels so much better now than it did when all this kicked off, and I feel very positive about the future. I am actually back on a 3-month course of Rifaximin that my gastro has prescribed me at the moment to see if we can totally kick the issue, and will probably follow-up with some kind of diet / supplement regimen for some time after that, but either way my symptoms are so much improved by what I've done in the last two years that that feels like a success. I can't say that the problem is gone forever or would never come back but I definitely understand it a lot better and have a lot of tools to make sure that my life doesn't fall apart again like it did those last three times.

I still don’t really know what this all means to me personally. The process of getting better (trying the prebiotic, having my health collapse, taking the various pharmaceutical & herbal antibiotics) almost destroyed me as a person. At some point I had distanced myself almost completely from my job, my girlfriend at the time, most friends and pretty much any semblance of a normal social life or any life at all. For the better part of a year life was really just an existence of suffering every day and hoping to make it to the next one. Despite that, and that of course things always can or could have gone differently, I unfortunately feel as if at a high level I had no other choice. I was completely unwilling to spend the rest of my life living below my full potential of enjoyment, and was always going to do whatever it took to get there. I am sometimes shocked that I managed to survive all of this, but I am here, still living and will try to deal with whatever the experience has done to me in the same way I dealt with the issue itself: by living it, experiencing it day by day, not turning away from it, and knowing that no matter how dark the world can become, so long as you are still here, it is not really over.

Although the physical symptoms were and have been excruciatingly painful, one of the most difficult things about this whole experience has been the level of misunderstanding and invalidation, both from the medical community and from some friends, family, other personal acquaintances and the general public, around what happened to me. I understand that it is a difficult story to follow, but unfortunately it was all very real and somehow I managed to find a route out of it for now. One day the medical community will figure this out and understand what happened to me and others like me (because they are also out there in very sad corners of the internet - links below), and share it with the world to build our collective understanding and compassion. Until then it is strange to be one of the few people to know all of this and what this experience feels like and has felt like, but I am trying day by day to come closer to people and understand why we aren’t yet equipped as a society to address these kinds issues on multiple fronts. I don’t blame anyone for not understanding what was happening to me, but the few who did and were willing to listen at the time are angels and I’m not sure I would have gotten through it without them.

Eventually I hope I will fully recover from all of this. Physically, mentally, emotionally, because it has touched every aspect of my life over the last twelve years. Until then I am just here living every day in this strange situation of being a survivor of such a horrible, confusing and largely misunderstood problem.

https://www.reddit.com/r/ibs/comments/jpkol3/how_probiotics_destroyed_my_health_long_storyrant/

youtube

#SIBO #guthealth #Youtube

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