Author Topic: IronFeather's case (female, 25 years old)  (Read 9055 times)

IronFeather

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IronFeather's case (female, 25 years old)
« on: March 27, 2021, 08:12:15 AM »
Introduction

Hello! I am a 25-year-old Spanish woman with POIS. In this thread I will detail the evolution of my case, from the very beginning until today (March 2021), and I will also include the results of my main medical tests so far, in case it might help someone or maybe shed some light on this terrible mysterious issue.

Please feel free to comment and share your ideas. We can beat this!

Index

1. My life before POIS
2. My teenage years: the first symptoms
3. Progressive worsening
4. Unexpected explosion: the worst POIS episode ever
5. The good years: sports & me
6. The bleach catastrophe
7. My POIS theories
8. Medical tests & results

New: I have now added the complete list of all my blood test results since 2014!
Link near the bottom of this page.
Now also added a summary of abnormal results, next to the previous attachment, translated into English.
« Last Edit: April 27, 2021, 05:05:35 AM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

IronFeather

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  • Posts: 59
Re: IronFeather's case (female, 25 years old)
« Reply #1 on: March 27, 2021, 08:13:52 AM »
1. My life before POIS

I was born in 1995 by C-section. It was a scheduled procedure (not an emergency), since my mother was older than 40 years old at the time she got pregnant with me, and that was considered being old to have children at the time. This was proven to be a big mistake: the doctor botched up the administration of anaesthesia and overdosed her, nearly killing her. She spent two days in a sort of coma and the doctors told her "she was very lucky to be alive", but didn't ever specify what exactly had happened. She didn't suffer any dramatic consequences, even thought her memory was affected and she isn't as good at memorizing and remembering things as she was before. And apparently I wasn't significantly affected either, but who knows?

My first health problem was what seemed a bad reaction to milk as a baby. I was fed with formula, and it gave me stomachaches and diarrhea, so my parents stopped giving me milk as soon as it was possible. It isn't clear what the issue was, since I'm not lactose intolerant and have eaten tons of yoghurt and cheese in my life, maybe it was a stomach bug and the problem was falsely attributed to milk.

I've always been sensitive to cold, and during my entire childhood I was very prone to catching whatever bug was around: colds, the flu, everything. I used to get sick at least twice a year. But apart from this, my only health issue was a sensitive stomach. I've always had an immense appetite, so my parents thought I was eating too much and this was causing me to develop my periodic episodes of vomiting, diarrhea and fever, which usually lasted around two weeks before everything went back to normal.

But when I was 10 years old, I suffered an intense episode of diarrhea that lasted 4 months, made me lose half my weight (I went from 52 kg to 28 kg), and had my parents pulling their hair out because all medical tests came back normal and no doctor could figure out why this was happening. Thanks to my mother's wonderful intuition, she figured it out on her own: I was intolerant to soy, which I loved and used to eat in various forms since I was a little kid (soy bread, miso, soy spaghetti, soy milk...). This was proven to be the cause of all my previous stomach problems too: they completely erradicated it from my diet, and I've had an iron stomach ever since, no issues at all. According to a doctor, I eat enough to feed two large men, and I've had zero problems since I don't eat soy, I didn't even get sick when we ate something spoilt at home and everyone else had terrible diarrhea for days.

At the end of that episode that made my mother discover my soy intolerance, when I was already almost recovered, I had during a few weeks the first symptom that I've later experienced in POIS. It was a few days before Christmas, and me and my mother had gone for a walk around town so I could look at toys and books and decide what I wanted. When we came back home, I felt strange. It's a very confusing feeling to describe: almost as if my body "didn't need to breathe", or forgot how to regulate the breathing pattern. I could hold my breath and feel no need to breathe in a long time. I had to "breathe manually", which led to hyperventilation and panicking. I had a few attacks like this during the next weeks, but after that it resolved spontaneously, even though it happened a few times in the next years, especially on very hot days in the summer (my favorite weather). I learned to live with it and not panic if it happened, and that was it. Now, considering the evolution of my POIS, I believe exercise was the trigger.

Between 10 and 13 years old I lived very happily, all my stomach problems were solved and I wasn't as sensitive to cold anymore. Those were my best teen years, always full of energy, growing very quickly. I gained 20 cm of height and 24 kg of weight in a year, and when I was 12, everyone thought I must be at least 18 and asked me how university was going. It was an amazing recovery. But it didn't last long - this was when my POIS started.
« Last Edit: May 31, 2021, 09:31:23 AM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

IronFeather

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Re: IronFeather's case (female, 25 years old)
« Reply #2 on: March 27, 2021, 08:14:48 AM »
2. My teenage years: the first symptoms

I had always been very sexually active, as embarrassing as it is to admit it. I started masturbating at around 3 years old - of course I didn't know what I was doing, just that it felt good and, somehow, that I should keep it a secret. I did it at least 2-3 times a week during my entire childhood, except when I was sick, and it never gave me any problems whatsoever. When I first got my period, at 11 years old, I realized that masturbating a few days in a row made me bleed between periods, so I started to avoid it for the first time. It was also at this age that I developed terrible acne on my face, chest and back, and it has never gone away, even though my chest and back don't look as bad as they used to.

Around 13 years old, I began having weird episodes of fever (ranging from 37C to 38.5C) with no apparent cause, that lasted exactly 24 hours and made me stay in bed until the next morning, when they were over. During these episodes I felt the same sensation as if I had caught the flu: muscle aches, chills, very warm skin, swollen lymph nodes in the groin and armpits, general feeling of being unwell, and sleepiness, plus a weird hyperactivity/mania before the fever set on. At first I had no idea what was causing them, as they didn't happen after every orgasm, just sometimes. I believe there was a build-up pattern happening: many O's in a row, or in consecutive/close days, made it more likely for the symptoms to appear.

There is another interesting symptom that appeared at this age and stayed with me forever, even when I'm not sick with POIS. I can't lay on my left side for too long, or else I get a very intense sharp pain in a vertical line exactly to the left of the sternum, as if there was something about to explode in there. I even thought of an aneurysm. But ultrasounds have shown nothing, and the pain doesn't appear with pressure when a doctor examines me, it just happens if I compress that region for too long. It seems to me like a nerve that is susceptible to prolonged compression and/or that isn't working properly, especially because it comes with a strange numbness around it and a strong tingling sensation.

This was the time when my growth stalled. I was 172 cm tall at the time, and weighed 62 kg. My height is still the same, but my weight started slowly going down until it reached 55 kg, and it has stayed the same ever since, no matter how much I eat (something that didn't happen before, even though I've always been slim). When I'm sick it can fluctuate a bit, usually down to 52-53 kg, and then it goes up again and stays at 55.

After a few months, I also developed another symptom: softer stool during the episodes, almost diarrhea, but not quite. This happened when the other symptoms were worse. And for many years, from 13 to 16-17, this was what my POIS was like. Nothing too serious, so I didn't really consider to stop masturbating from time to time, I was just more careful to not overdo it, and to space it in time. I thought that maybe it was all due to crazy hormones and that it would go away once my teenage years were over and everything had settled properly. How wrong I was.
« Last Edit: May 31, 2021, 09:32:34 AM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

IronFeather

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  • Posts: 59
Re: IronFeather's case (female, 25 years old)
« Reply #3 on: March 27, 2021, 08:15:32 AM »
3. Progressive worsening

Slowly, but steadily, things got worse and worse. At 17 years old, my POIS episodes became more and more frequent, and they were also longer, lasting two or three days instead of just one. I started university, and everything went great, I had a happy social life and almost perfect grades, but the shadow of POIS hung heavily over me - I couldn't have a normal relationship because of it, and had to reject everyone who showed interest in me. It wasn't too much of a problem back then, as I wanted to focus on my studies only, but it's becoming a bigger and bigger problem with time: I want to form a family, and have children!

In my third year of university, when I was 19, I had the first POIS episode that lasted longer than a week, precisely at the end of the summer when I had my first and only week of holidays in the entire year. I had masturbated the day before, which I later hated myself for, and had to take my last exam with the full set of symptoms going on. Luckily I've never had significant mental symptoms associated to POIS, except for irritability (getting furious at the slightest provocation, feeling like screaming at everyone for the smallest reason) and a very slightly (but noticeably for me) decreased ability to form complex sentences quickly, and so my grades weren't affected. I went on holidays that week and said nothing, but I remember I had a fever all the time and my appetite was very diminished even though there was nothing wrong with my digestive system itself (I had to force every bite down, I had no desire to eat, but I didn't develop any problems because of eating a lot without feeling hungry), and I had a general feeling of deep unwellness that made it impossible to enjoy anything I was doing.

From this point on, POIS symptoms usually took two weeks to completely disappear, but they only consisted of fever (around 38C), swollen lymph nodes, nausea, feeling unwell, my acne flaring up, a strange sensation of tightening/tension in the diaphragm before the other symptoms started, and having a very decreased appetite (not during the entire episode, just the first few days).

The feeling of nausea was located in a specific point of the abdomen, exactly where the sternum ends, which leads me to believe in a vagus nerve malfunction. The only time I ever had POIS symptoms without any sexual activity having caused them was one day when I spent around an hour laying in bed belly-down, reading a book. It seems I can't apply pressure to that particular spot below the sternum where my feeling of nausea is located, or else POIS starts. I felt nauseated afterwards, with a 38.5C fever and zero appetite, during three days.
« Last Edit: May 31, 2021, 09:34:43 AM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

IronFeather

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Re: IronFeather's case (female, 25 years old)
« Reply #4 on: March 27, 2021, 08:16:15 AM »
4. Unexpected explosion: the worst POIS episode ever

Once I graduated in Mathematics and started studying Physics (two years later, at 21 years old), I experienced the worst POIS episode I had ever had in my life, that worsened my previous symptoms permanently and added new complications. It was February of the year 2018, and I hadn't developed an episode for at least two months. Suddenly, one afternoon my throat started to feel as if had been screaming for a long time or rubbing it with sandpaper. The next morning I had a 39.2C fever and was feeling so weak and ill that I couldn't get out of bed, and my tonsils soon were so swollen that swallowing felt like I was swallowing knives. That typical feeling of nausea that had always accompanied my POIS symptoms was stronger than ever, and I remember my saliva was so dense that I almost choked on it a couple of times - dehydration? I was so worried that I went to the ER twice, once they told me it had to be "a virus" and the next time they did a blood test and told me it was probably "some bacteria". But I went to a specialist, who prescribed me more specific tests, and everything came back negative, almost all my results were perfect. The only parameter that ever showed something abnormal was the C-reactive protein, which was very high.
 
I started throwing up everything I ate, and sometimes what I drank too. The second time I went to the ER they prescribed me an antibiotic, cefixime, which helped a bit but was a disaster for my digestive system - I started going to the bathroom three or four times per day, but I had no diarrhea, it just seemed as if everything I ate came out with no absorption happening, so I had to stop taking the antibiotic (I believe it was affecting my gut bacteria). Thankfully after a couple of weeks my symptoms resolved spontaneously like usual, but the whole ordeal lasted exactly one month. I had to miss classes for three weeks, and I'd never even missed one day before.

From this point on, every single time I had my usual set of POIS symptoms, my throat hurt when I swallowed and I could see one or two white spots on it if opened my mouth in front of the mirror, most of the time in the left side. No doctor could ever tell me what it was or what caused it. Also, a particular spot in the left side of my left breast (sometimes in the right side of the right breast too, if the episode was serious enough) got slightly swollen and very sensitive to touch, it hurt a lot to press it, which also happened during my periods sometimes.
« Last Edit: May 31, 2021, 09:35:10 AM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

IronFeather

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Re: IronFeather's case (female, 25 years old)
« Reply #5 on: March 27, 2021, 08:27:26 AM »
5. The good years: sports & me

Six months after that, on September 2018, I signed up for a martial arts class for the first time, because my best friend had just started going and was teasing me all the time about it, trying to get me to join. This was how the best years of my life started - I've never been happier, or healthier. When I realized how weak I was compared to all the others, I started training calisthenics at home, and for a year and a half, I trained every day and went to the martial arts lessons twice a week.

I got much stronger than I ever was, I could do 200 push-ups a day, I felt full of energy, and on top of the world. And the best part of it was, whenever I felt a POIS episode coming (sometimes, even if the symptoms had already appeared) I could exercise for a bit and it would go away instantly, almost completely, or at least it would be very reduced in its intensity. The only downside was, whenever I developed POIS symptoms, my strength would significantly decrease (around 20%-30%), and I had to train again to gain it back (maybe an inflammatory process damaging muscle?).

Something had me a little bit frustrated, though. I had always been praised for being much stronger than my slim physique suggested, and I was proud of it, and happy with how quickly I could gain strength. But even when it was unusually easy for me to progress to more advanced exercises that required more physical strength (considering I'm a thin woman with normal testosterone levels), it was very difficult for me to increase the number of repetitions in any certain exercise. This has always been me: good strength, very low endurance. And my cardiorrespiratory capacity is ridiculous, I can't even run half a kilometer without panting like a dying dog and having to stop, which was a problem in martial arts too, since just getting up quickly from the floor a few times made me short of breath.

Another puzzling thing was that I couldn't train the plank position. Just holding it for a few minutes a day, spread over a handful of sessions, made me feel that familiar sensation of nausea and irritability and develop a slight fever. Also, exercise made my acne flare up a lot, same as it had always happened during any POIS episode.

But I could exercise as much as I wanted and never got any adverse effects from it. I remember one week when I trained like crazy every single day, because I had a belt test next week, and I felt better than ever, no fatigue, no problems, nothing.

Then came the pandemic, and on February 2020, I went to my last martial arts lesson before everything was closed and the classes cancelled. Little could I imagine I would never be able to go back.
« Last Edit: March 27, 2021, 10:18:03 AM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

IronFeather

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Re: IronFeather's case (female, 25 years old)
« Reply #6 on: March 27, 2021, 08:33:18 AM »
6. The bleach catastrophe

During March and April 2020, we were in lockdown, and the paranoia about the pandemic was at its peak. Everyone was obsessive about hygiene, and my mother caught the "cleaning fever" too: she started using bleach mixed with water to clean everything, to mop the floor, to disinfect the shopping bags and the outside of all food packages... By April I was already feeling weird with unespecific symptoms: my heart beated more intensely, as if each beat was much stronger than usual and resonated in my chest and neck, and sometimes I felt cold and had unexplainable chills even on hot days. I had stopped exercising in March because of a lack of free time, due to all the mess of adapting to online lessons, the immense amount of homework that professors threw on us, and so on, but in April I was determined to follow a calisthenics routine again. When I tried, I was surprised to discover that I started trembling right away even with the most basic exercises, as if I was making an immense amount of effort, which wasn't true. It felt as if my movements weren't smooth anymore, but instead made up of a series of minuscule discrete jolts, and I couldn't even form a tight fist with my hand without my arm shaking. I couldn't tense any muscle without it shaking. It was crazy.

I thought, oh well, maybe I'm tired, maybe I'm lacking some vitamins or minerals, so I thought it would be reasonable to postpone exercise until I could visit a doctor and see if this was the case. Because of this, all I did in terms of physical exercise between April and June was some dynamic stretching, and walking at high speed for one hour on my treadmill twice a week (as I said before, I get very short of breath too soon if I run, so I settled for half-walking-half-running instead).

Between April and May, I had an interesting symptom that I have yet to find an explanation for. Suddenly one day my right shoulder started hurting a lot, but it clearly wasn't a physical injury because doing push-ups didn't affect it (I tried doing some just to check if it was indeed somehow damaged). It had to be a nerve issue, or an accumulation of toxines, or who knows what, but not a real injury, because I hadn't even used my shoulder for anything important in at least two months. It went away in two weeks. By then I was determined to stop all sexual activity, since I now had no sports to counteract it with, but I relapsed once in the first days of May - and when the inevitable symptoms appeared, that very night, my left elbow started hurting immensely every time I bended my arm, as if I had ripped a muscle off or broken a bone. I almost couldn't use that arm to wash my hair that night, it hurt that much, but the next morning it was all completely back to normal, as if nothing had ever happened.

At the beginning of June, I developed exercise intolerance. I didn't realize at first that this was the cause of my symptoms, but one day I began feeling very sick after walking on the treadmill, had zero appetite, and got a fever and extreme weakness. I was puzzled, I had stopped all sexual activity more than a month ago, and I couldn't think of anything that was causing everything in my body to go haywire in such a sudden manner, and anyway, I had never felt so immensely tired during POIS before, nor had I ever felt random pains in my chest like it happened this time. Even lifting a spoon felt like a strenuous effort during the worst part of the episode.

After this, it all went downhill. That symptom I had when I was 10 years old before my POIS started, as if I couldn't regulate my breathing properly, came back stronger than ever, and this time it stayed. Most of the time I felt as if I was suffocating, with a horrible "electric feeling" right where I'd always had the feeling of nausea during my POIS episodes, under the sternum, as if electricity was passing through a nerve there, uncontrolled. The sensation of my heart beating too strongly evolved into a full tachycardia at random times during the day and night, and my usual extrasystoles, that I've had since I was a kid, got worse, more scary and more frequent. I visited a cardiologist, but he couldn't find anything that was wrong with my heart. I felt dizzy and unsteady, with a strange sensation of pressure in the middle of my brain, but it never affected my mental abilities, and I could carry on studying during the summer and kept my usual good grades. In August I started taking a vitamin-B supplement that a doctor recommended me because of my low energy levels, and during that time I relapsed and masturbated again. I'm not sure which of the two factors played a more important role in what happened, but the truth is, one night I woke up with a 140 bpm tachycardia, which eased into 120 bpm after a couple of hours and stayed at around 110 bpm for almost a week, with higher peaks in the middle of each night. It was terrifying, it felt as if my heart would never stabilize its rhythm, and would beat faster and faster until it gave out.

I went to the cardiologist again, but his answer was the same, nothing was wrong, even though he agreed that my heart rate was out of control and there had to be something causing it, but he was confident that it had nothing to do with the heart itself. I took my last exams in September and graduated in Physics, but I was still feeling terrible. It wasn't until the end of September that I realized, by pure luck, that it could be bleach that was affecting me so badly. And indeed, one week after we completely erradicated it from the house, the worst of my symptoms spontaneously resolved. But I was left with some after-effects that have changed my life:

- I can't generate enough heat to keep my body warm when the weather gets too cold. Even in warm weather, I have to sleep under a couple of blankets (I've slept with nothing on before, in the warmest days of the summer, or with just a sheet on me), or I wake up shivering and sometimes even with other symptoms like my heart racing.

- The exercise intolerance seems to be permanent. I can't even walk too intensely for longer than a few minutes or I get immediately sick with a fever, lack of appetite, inflammation in random places (last time it was my ribs), breathing disregulation, irritability and an intense headache that gets worse at night and makes me feel as if my brain was being compressed. I've tried running, push-ups, rope-jumping... and it all makes me sick in the same way, by doing only a couple of minutes or few reps of the exercise (30 rope jumps, or 10 push-ups, are already too much).

- Most of my strength is gone, especially because I can't make any physical effort without shaking, which makes it difficult apply force with any body part, to keep my balance when lifting something, to grip things tightly, and to coordinate my body properly. I bump into things a lot and look like a clumsy duck.

- My heart still beats too strongly sometimes, especially when laying down face-up in bed. It's very uncomfortable and sometimes even wakes me up at night. It gets better if I manage to get warm, usually by adding a ton of blankets to my bed until I start sweating. Masturbating is completely out of the question, it leads to episodes of out-of-control tachycardia, that always start in the middle of the night but sometimes happen during the day too, and also to that pain the left side of my chest appearing for a few days, without me having compressed that region by laying on my left side.

- I can't take vitamin B supplements. They give me insomnia, headache, irritability and restlessness. I used to be able to take them normally, and I'm not talking about huge doses that could make these symptoms reasonable. I've never had any trouble sleeping at night, but when I tried to take these vitamins again a couple of months ago, 48 hours later I spent an entire night in trying to fall asleep in bed and wasn't able to sleep a single minute. Two days after I stopped taking the supplement, my sleeping pattern was completely restored.

So, this is my life now. I can't exercise at all, I've lost most of my strength and all my progress in sports. I feel like I can't control my own body, this shaking with every movement that implies the slightest effort is infuriating, and I can't even play the piano like I used to. I have to study one more year at the Conservatory here to get my piano degree, and I don't think I'll be physically able to do it, since rehearsing some pieces at that level implies a lot of effort and is equivalent to, or even more intense than, an exercise session. It's already been 6 months since we stopped using bleach at home, so I don't believe these symptoms are temporary, but instead some sort of permanent after-effect of something that went wrong in my body because of the exposure to bleach. I feel stuck in a state where something is imbalanced, or working the wrong way.
« Last Edit: May 31, 2021, 09:37:40 AM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

IronFeather

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Re: IronFeather's case (female, 25 years old)
« Reply #7 on: March 27, 2021, 08:54:18 AM »
7. My POIS theories

At first I was sure that POIS was some sort of autoimmune reaction or disease, but I don't believe this anymore. As you can see in my medical tests, all immune parameters have always shown normal results, and many of my symptoms have led me to the conclusion that POIS is a result of something not being right in the nervous system. But I have no idea if the problem lies in the nervous system itself or if there is some kind of underlying problem that disregulates it or makes it work in ways it shouldn't.

My sudden bursts of tachycardia, the inability to regulate my body temperature properly, the lack of appetite that has nothing to do with any issue in my digestive system, the feeling of nausea exactly where the vagus nerve is located under the sternum, my inability to apply pressure to that spot without POIS symptoms appearing... it all seems to fit with some kind of malfunction of the nervous system in general and/or the vagus nerve in particular. I first started thinking of the vagus nerve when I tried to train core strenght using the plank position and got sick, because it implies a lot of muscle tension in that point, same as resting my body weight on it when laying down in bed reading a book had made me sick too. Recently I've tried diaphragmatic breathing when I'm sick with POIS and it seems to reduce the symptoms, which would fit in this theory, since it stimulates the vagus nerve.

Also, the feeling of tension in the diaphragm that I always get before a POIS episode starts could suggest the nerves there being affected. It is a symptom that has got worse with time, and sometimes it even happens when I start eating: my diaphragm and core muscles seem to contract when food enters my stomach, but it goes away if I keep eating.

The fact that all medical tests ever done on me have shown normal results makes me think it's all something that's happening in the nervous system itself, a malfunction that doesn't imply altered parameters in the blood. A virus infection of the nervous system, like in the herpes theory for POIS? I can't be sure, but given my symptoms, I'm pretty sure that the nervous system is what is causing all of this, at least in my case. But it can't have anything to do with psychological factors, I've always lived a happy normal life, I've experienced no traumatic events, and I'm not prone to anxiety or too susceptible to stress (in fact, I've always felt better when I'm working hard on something). Something must have damaged the nerves, how else could my shaking be explained? I've got normal levels of all the substances that doctors could think of in relation to this if it was caused by problems in muscle contraction (calcium, sodium, potassium, magnesium?). To me, it feels as if my nerve fibers couldn't transmit impulses properly, and instead did it in jumps and jolts. And it happens uniformly, there don't seem to be any body parts that are more affected than others.

Also, my sudden exercise intolerance seems to have an inflammatory component. Every symptom I get after exercising makes me think that there is an inflammatory process out of control (fever, headache, immense irritability, intense pains in random parts of the body), maybe because the vagus nerve can't regulate inflammation properly, as it isn't working the way it should for some reason?

The fact that such a catastrophic worsening happened as a consequence of exposure to bleach is a mystery to me, and it seems that doctors can't explain it either. Initially, I thought that maybe I had a problem eliminating toxic substances from the body, and that because of this the bleach fumes could have had an accumulative effect, damaging something. But wouldn't some parameters in my blood tests have to appear altered in this case? Maybe the bleach fumes weakened the body and an oportunistic infection by a latent virus flared up? Hopefully I'll find out someday.
« Last Edit: March 27, 2021, 10:37:21 AM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

positivethoughts

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Re: IronFeather's case (female, 25 years old)
« Reply #8 on: April 14, 2021, 12:23:12 PM »
Hi IronFearher! Thanks for sharing your experience.

Have you tried any treatment aside from the sport that temporary helped you and the vitamines? Any suplements, medicines,...?

IronFeather

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Re: IronFeather's case (female, 25 years old)
« Reply #9 on: April 18, 2021, 01:06:02 PM »
8. Medical tests and results.

Here you can find the results of all my blood tests (2014-2021, both included), plus a study of oropharyngeal flora (which was normal) and a lactose intolerance test, that was negative.

I have also had a few ecography scans done, but nothing abnormal was found in any of them.
« Last Edit: April 27, 2021, 05:06:10 AM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

IronFeather

  • Jr. Member
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  • Posts: 59
Re: IronFeather's case (female, 25 years old)
« Reply #10 on: April 18, 2021, 01:18:44 PM »
Hi IronFearher! Thanks for sharing your experience.

Have you tried any treatment aside from the sport that temporary helped you and the vitamines? Any suplements, medicines,...?

Hi, positivethoughts! I haven't tried anything as a treatment for POIS, but I have taken a few supplements along the years, even thought I was sure none of them would help me with POIS. I just posted the results of all the blood tests I've had done since 2014, and as you can see in them, I've always had vitamin D and vitamin A deficiency, so I've taken vitamin A pills and vitamin D drops (both natural, because the ones sold in pharmacies had too many unnecesary additives in them). I haven't had much success and my levels of both are still low, even though I've taken huge doses at some points, which makes me think I have some sort of absorption problem.

Back when I was exercising a lot two years ago, I also took Inteligen's and Neuroforte, both generic natural supplements with multiple vitamins and minerals. I didn't take them for any particular reason, just because I thought it was reasonable to help my body and brain in some way, since I was studying a lot at university, playing the piano for hours every day, attending martial arts lessons and training calisthenics at home. I also took protein powder every morning that year, a vegan supplement made of hemp, rice and pea protein.

Recently, last summer, I tried to take the B-25 supplement by FairVital, but it gave me a terrible reaction as I explained above, so I had to stop it immediately. I tried again a couple of months afterwards, with the same result.

I haven't tried any medicines so far, as I'd rather not take any unless absolutely necessary.

Edit: I forgot to mention that I'm taking an Omega 3 supplement daily now (1 capsule/day), again for no particular reason, only because it's good for the brain (I'm still studying a lot) and heart (I'm still having spontaneous tachycardia sometimes, especially when laying down face-up). It's the Omega 3 supplement by EnerZona, quite expensive but worth it because it doesn't produce that horrible reflux that makes you taste fish oil all day long.
« Last Edit: April 18, 2021, 02:18:24 PM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

IronFeather

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Re: IronFeather's case (female, 25 years old)
« Reply #11 on: April 18, 2021, 01:25:17 PM »
Bleach?:
Stress, inflammation and cardiovascular disease
"Neurogenic inflammation may also occur when a toxin or chemical irritant to the skin stimulates sensory nerve endings with subsequent release of SP and/or other inflammatory sensory neuropeptides."

Thanks for the info Muon, but I can't open the link, it seems to be broken... does it let you open it?

I wonder about these in your case:
Milk sensitivity + acne: IGF-1
Overproduction of lubricate + colitis: VIP
Low BMI + appetite issues: Leptin


Nice! I'll keep these in mind for my next doctor visit, let's see if I can manage to convince him to test for more specific parameters like these. So far, the lab where I had my last blood test done didn't test for TH1/TH2 even though it was included in the doctor's prescription, and the same happened with most B vitamins and all herpes viruses except for types 1 and 2. You can see all my medical test results above (it's quite a lot, 40 pages...).

I thought it was interesting that my B3 level is very low. I wonder why. My doctor just prescribed me niacin, but I'm not sure if I should take it, considering how badly I reacted to the B vitamins supplement I tried to take last year. Maybe it was niacin that I was reacting to.
« Last Edit: April 18, 2021, 01:27:58 PM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

Muon

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Re: IronFeather's case (female, 25 years old)
« Reply #12 on: April 18, 2021, 01:54:28 PM »
Wow this is a lot! It will take some time to go through it. Thank you for sharing this. Yes that link works for me, try other extensions like ee or st in url. Here is some info about a niacin pathway, last picture: https://poiscenter.com/forums/index.php?topic=3746.msg39890#msg39890

We need some people on this to disect it.


IronFeather

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Re: IronFeather's case (female, 25 years old)
« Reply #13 on: April 18, 2021, 02:35:21 PM »
You're welcome, Muon! I'm sorry that it took me so long to put this together and upload it here, I tried to do it last year but I hadn't kept most of the documents and had to email my doctors and the lab multiple times to find them all.

Thanks, the ee extension worked perfectly! That's very interesting, I'll have to read it more carefully but I've always had the impression that in my case (and maybe for everyone) two things are happening for sure: an out-of-control inflammatory response is being triggered when it shouldn't (after an orgasm, and now with exercise too), and the nervous system is involved (maybe the culprit).

When I realized how much bleach was damaging me, I thought I could have some problem with the elimination of toxic substances from my body, so that bleach fumes had accumulated in me, reaching toxic levels. But the idea that it could have activated the nervous system somehow makes a lot of sense. Do you think it could happen without touching the substance in question? Because I never touched bleach, it was just its fumes that I inhaled (and not too concentrated, I think, how it could have caused such a catastrophic reaction still puzzles me).

Oh, and sorry that my blood test results are in Spanish, I tried to translate them manually to English but gave up when I realized how long it was going to be, and just took screenshots and cropped them. I hope most words and initials are reasonably similar to their English equivalents...

Also, I think most of my results weren't too interesting, but I included them all just in case someone might see something that I'm missing. I also specified the date when each analysis was done, and whether I was experiencing POIS symptoms at the time or not. The time when I tested for more specific parameters was in the summer of 2019, and also in my last analysis in March 2021 (this was the first time they ever tested my niacin level).
« Last Edit: April 18, 2021, 02:39:50 PM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

Prospero

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Re: IronFeather's case (female, 25 years old)
« Reply #14 on: April 18, 2021, 05:54:52 PM »
Hi IronFeather, thank you for your nice thread.

I don't have the skills to interpret your test results, but I noticed the positivity for Helicobacter Pylori. Maybe you said something about this elsewhere, but I guess that you were treated for this?

There are many common features with my own Pois. In particular, tachycardia, breathing issues, problems with exercise, problems when lying down and with a specific area near the heart or the sternum, impossibility to gain weight and muscle, now permanent fatigue/weakness.

Your pre-Pois story also speaks to me: you had gut and problems due to soy intolerance in your childhood, then solved this problem and had a perfect health for a few years between 10 and 13, then Pois. As regards my own case, I had intestinal issues in my childhood (frequent constipation, and colitis which sent me to the hospital two times) as well as some social/psychological difficulties (probably mild Asperger or schizoid personality), then after a specific period of my life (a one month holiday in a foreign country where my father was working) a very good period started when my mental and physical health was great, I gained muscle, friends, and was overall particularly happy (from 12 to 14 years old). Then progressively Pois appeared and my health got worse while both my early gut and psychological problems came back in a stronger way. I had always believed that this good period between 12 and 14 was due to the psychological benefits of my holidays with my father, but I just thought about something else: I was sick with turista (as is almost normal for holidays in Africa) and had diarrhea during the whole month. I wonder if this may not have cleaned my gut of SIBO or something like this, for some time. Whatever, sorry for the digression, but reading your story encouraged me to see a parallel.

If Omega-3 are not effective in reducing tachycardia, may I suggest you to try hawthorn (Crataegus) in case of crisis? For me, it's really efficient, notably before sleep - sometimes I would not be able to fall asleep without it. Apart from stopping tachycardia its also has a relaxing effect. Notice however that 1/ the effect doesn't last for more than several hours, 2/ obviously it's not a cure, it just helps to manage this specific symptom and 3/ sometimes, when Pois is really strong, it doesn't work (in fact, in my case my heart rhythm does decrease, but after some time I may have a kind of big nervous shake-up and then tachycardia comes back).

Muon

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Re: IronFeather's case (female, 25 years old)
« Reply #15 on: April 18, 2021, 06:47:38 PM »
Putting some half-baked notes here, will continue later:

Read articles completely:
Niacin in the Central Nervous System: An Update of Biological Aspects and Clinical Applications
Figure 3--->Nicotinamide/NAD loop.

Aspects of Tryptophan and Nicotinamide Adenine Dinucleotide in Immunity: A New Twist in an Old Tale


Furthermore, mast cells, although they are not typical APCs, might play an important role in the tryptophan/QUIN/NAD+ pathway regulating T-cell activation.

Combo of supplements to stimulate serotonin synthesis:
Vitamin D and the omega-3 fatty acids control serotonin synthesis and action, part 2: relevance for ADHD, bipolar disorder, schizophrenia, and impulsive behavior

A tryptophan metabolite, kynurenine, promotes mast cell activation through aryl hydrocarbon receptor

Kynurenine, but not KA and QA, enhanced IgE-mediated responses, including degranulation, LTC4 release, and IL-13 production in BMMCs through the activation of PLC-gamma1, Akt, MAPK p38, and the increase of intracellular calcium.

IL-13: https://poiscenter.com/forums/index.php?topic=2545.msg40256#msg40256
Akt: https://poiscenter.com/forums/index.php?topic=3765.msg40359#msg40359

Elevated progesterone not a EC 1.14.99.9 deficiency, probably co-factor problem, not surprising the ones that are involved:
https://sci-hub.se/https://www.tandfonline.com/doi/abs/10.1080/13685530400004199
In male patients with cytochrome P450C17 (steroid 17a-hydroxylase/17,20-lyase; EC 1.14.99.9) deficiency, the progesterone levels are clearly elevated.

https://en.wikipedia.org/wiki/Steroid_17alpha-monooxygenase
It has 3 cofactors: NADH, NADPH, and Heme

IronFeather's low Nicotinamide levels in combination with my brother's result may indicate there is something going on with the tryptophan/QUIN/NAD+ pathway. He got low 5HT+tryptophan. Ironfeather could investigate tryptophan levels. Tryptophan catabolites can downregulate IL-17, some pathogens are able to induce this process. Her elevated neutrophils could indicate infection.

NAD metabolites act back on this pathway. POIS might be a metabolic/inflammatory trap. IFN-g acts on IDO:
https://poiscenter.com/forums/index.php?topic=2755.msg39987#msg39987

Low cholesterol+low vit D seen in Heather and Muon as well. IF's vit D metabolites could show vit D metabolism problems. Does NAD+ act on vit D metabolism?

Some overlap in certain symptoms between IF and Muon not fully adressed yet.
« Last Edit: April 18, 2021, 07:07:48 PM by Muon »

Quantum

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Re: IronFeather's case (female, 25 years old)
« Reply #16 on: April 18, 2021, 07:33:41 PM »
Hi Iron Feather,

Thanks for having taken the time to create such a detailed thread.

Like you, my intellectual abilities are not affected by POIS. Most POIS sufferers have brain fog, memory problems, inability to concentrate, and so on.  However, I use to have massive emotional symptoms, before developing my pre-pack method.

I also have exercise intolerance.  When I do sports in the evening, I used to wake up the following night in hypotension and tachycardia.  Hopefully, I found that taking enough potassium ( around 16 mEq) and magnesium after sports spare me that awful discomfort.   However, it is not clear yet as to why potassium helps me, both in POIS and after exercise.

Your vitamin D is very low. There is evidence now that low levels of vitamin D are linked with higher levels of inflammation. Did your MD try higher doses to raise your level to normal?  Do you feel better in summer when you can have skin exposure to the sun?



You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Muon

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Re: IronFeather's case (female, 25 years old)
« Reply #17 on: April 19, 2021, 09:07:00 AM »
I wonder about these in your case:
Milk sensitivity + acne: IGF-1
Overproduction of lubricate + colitis: VIP
Low BMI + appetite issues: Leptin

Nice! I'll keep these in mind for my next doctor visit, let's see if I can manage to convince him to test for more specific parameters like these.

Forget about these for a moment. Low nicotinamide could indicate absorption issues. Discuss a Tryptophan test with your doctor (if this is available, probably not), serotonin could be checked as well.

You could modify post 8 and extract all the abnormal results from the file like I've done in my thread.

I thought it was interesting that my B3 level is very low. I wonder why. My doctor just prescribed me niacin, but I'm not sure if I should take it, considering how badly I reacted to the B vitamins supplement I tried to take last year. Maybe it was niacin that I was reacting to.

Running around with a deficiency isn't smart either. You have a low Niacinamide = Nicotinamide level if I've read it correctly. Niacin = Nicotinic Acid.
« Last Edit: April 19, 2021, 01:14:00 PM by Muon »

Muon

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Re: IronFeather's case (female, 25 years old)
« Reply #18 on: April 20, 2021, 05:46:37 AM »
Will the Th1/Th2 (IFN-g/IL-4) balance still be measured?
« Last Edit: April 20, 2021, 07:00:43 AM by Muon »

BoneBroth

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Re: IronFeather's case (female, 25 years old)
« Reply #19 on: April 20, 2021, 06:24:04 AM »
Hi IronFeather!

Thanks for your great documentation and a very important piece of the puzzle since you are a female. I share alot of your symptom-history. I will take some time to analyse it. I'm planning to do a organ/symptom/analyse value list that helps us understand what organ is causing each symptom. I belive that the POIS related inflammation (caused by some hormonal inbalance) is comproimising organs in the whole body - specifically organs that has a high blood flow: blood vessels, heart, liver, kidney, brain and intestines. This explains why we experience so many diffrent symptoms.

Each organ gives it own symptom when function is decreased (or in chain reactions). Depending on what organ is the weakest link the symptoms appears diffrently on diffrent people. Some examples:

Kidney -> Low blood pressure, POTS, headache, varicose veins, slow intestines/constipation. I'm staring to belive the kidneys might be the most important organs relating to POIS symptoms since they are regulating the blood pressure - an adequate blood supply is everything for a good health

Liver/gall bladder - > Acne, varicose veins, yellowish stools, headache, blood pooling, thick blood, liver spots, low bilirubin levels and alcohol sensitivity.

Intestines - > Bloating, gas, candida, leaky gut, skin issues, coated tounge which leads to vitamin deficiency, advanced hormonal imblances, SIBO, auto-immune disorders (that cause damage on the same organ as POIS inflammation) and headache

Brain -> Headache, depression, no motivation and a long list of symptoms because of decreased function in hypothalamus/pitutary

Thyroid -> Temperature regulation, hotflash, difficulty sleeping, muscle weakness, hyperactivity.

Adrenal -> Cortisol excess followed by cortisol decline -> inflammation, testosterone deficiency. Cushing's syndrome, Addison's disease.

CNS (Central Nervous System) - > tingeling, difficult to breath, sudden urge to urinate

Blood vessels/blood - > varicose veins, blood pooling (thick blood) because of clumping platelets

Gonads (in males)  -> Testosterone deficiency, slow healing process, aggregated inflammation

When the intestinal function is damaged (due to the POIS inflammation) it will in time lead to similar symptoms as POIS, because the process is the same: A leaky gut will leak substances into the blood stream and when those substances attach to organs the immune system will send lymphocyes to the site and cause inflammation. But instead of inflammatory hormones and hormonal break down products, this inflammation is caused by substances iike proteins, bacterias, fungus etcetera that should not normally escape from the walls of the intestines.

This came clear to me as I fixed my acne issue after doing a simle administrated liver cleanse (I dont get as severe acne after POIS now). I still get the other symptoms on POIS, but not so much the liver related, since the liver is now somewhat restored (with nutrition/detox). On POIS the liver might be so inflamed that might be working on only 5-30% of its normal rate (this is not easy to analyse due to the complexity of the livers detoxification stages, the stage 1 detoxificaiton pathway might work, but the path 2 pathway might halt. This leads to accumulated toxins in the whole body (headache). Some hormonal breakdown products are 10 times more toxic/inflammatry then the hormones itself. A compromised liver is very damaging for your health in the long run, however the liver has a tremendously capability to heal, even in a very bad stage.

With this view it might be more easy to plan mesures for the restoration phase. But you cant scoop water from a sinking ship forever. Although restoration is essential for the healing process the cause of POIS still must be solved. The main measure could be boiled down to stress management, better sleep and restraining from orgasm for at least a year. I get into more detail in my info below.
« Last Edit: April 20, 2021, 02:16:56 PM by BoneBroth »