IronFeather's case (female, 25 years old)

[Muon]

Niacin, colitis:
GPR109a: The Missing Link between Microbiome and Good Health?


Lack of butyrate producing species in Simon is no coincidence, butyrate acts on same receptor.

16S Microbiome test from Atlas Biomed (I don't have any printout of results, they are visible in a webpage with diagrams, so I can't post all of it)
- I am missing a number of important butyrate-producing bacteria such as faecalibacterium, roseburia, coprococcus, akkermansia. I also have very low eubacterium.
- I am also missing a non-butyrate bacteria called Lactobacillus.
- Bifidobacteria is about 2.4%.

Butyrate maintains the gut lining, it also produces regulatory immune cells that prevent autoimmune disease. People with Celiac disease and IBS have been found to have low butyrate bacteria. I think when we orgasm, oxidative stress rises and our butyrate bacteria cannot produce enough butyrate to suppress it so we get damage to the body.

If IF has a lack of butyrate producing species on top of B3 defiency it could make things even worse.

Could tryptophan have played a role in her colitis?:

Gut microorganisms and their metabolites modulate the severity of acute colitis in a tryptophan metabolism-dependent manner

Impact of the Gut Microbiota on Intestinal Immunity Mediated by Tryptophan Metabolism

Poisers on ketodiet could have altered their NAD+ levels while on diet:
Ketone-Based Metabolic Therapy: Is Increased NAD+ a Primary Mechanism?

The tryptophan/QUIN/NAD+ and Tryptophan/Serotonin pathways could be messed up.

https://en.wikipedia.org/wiki/Butyric_acid

[Hopeoneday]

Hi IronF, what induce full blown pois in your case, is this orgasam?
Do you get full pois from high  sexual arousal without orgasam ?
Is orgasam crucial for full pois mode?

[Muon]

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.

My first health problem occurred when I was breastfed as a baby.

Opioid Peptides: An Overview of Functional Significance
"Either these are produced within the human body or they are derived from certain food sources (milk, cereals, vegetables, meat, poultry etc.), the former being endogenous opioid peptides and the latter are the exogenous opioid peptides."

They can also induce respiratory depression, it could tie into our episodes of manual breathing during hot weather conditions. Not sure what heat has to do with this aside from potential involvement of mast cells/dysautonomia/neuroinflammation.

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.

I have similar sensations in a small area of the center of my head (related to vascular dynamics? Ballooning of a blood vessel? Note: MCs are relatively higher concentrated close to the endothelial lining).

Weirdly I have this same thing happen the first night of POIS episodes: when falling asleep it is like my brain forgets to tell my body to breathe, and I keep half falling asleep, realize I'm not breathing, and then get up gasping.

Generally if I just get up and read a book I'm fine, but if I try to sleep it continues on and off through most of the night.  Other nights I am fine.

 

[IronFeather]

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?

Hi, Prospero! Thank you! I just read your thread too, and I'm surprised at how many similarities there are between our cases. We have very specific symptoms in common: the special sensitivity to abdominal exercises (holding the plank position made me sick even when I could do sports), waking up earlier when we're not in POIS, the unpleasant body odour when we're sick... and that fresh feeling with each breath when healthy. That particular symptom makes me think that there's something wrong with our nervous system's signals, because nor the fresh feeling nor the suffocating feeling can be real, since my oxygen saturation level in blood is 99% in both cases.

No, I was never treated for Helicobacter Pylori. It appeared after I started university, probably because the bathrooms were used by hundreds of students every day and I caught it from somebody else. I found out when I visited a gastroenterologist because of blood on my stool (after a colonoscopy, I was diagnosed with internal haemorrhoids, but I have never bled from them again), and he thought it wasn't important, since in his words "more than half the population has Helicobacter Pylori". So, I was never treated for it, and I was puzzled to see that it spontaneously disappeared over time. I'm not exactly sure why or when, all I know is that it was positive in February 2015, in September 2016, in January 2017 and in July 2018, but negative in June 2020. By then I had been exposed to bleach for 3 months, so maybe the bleach fumes, or my reaction to them, killed the H. Pylori somehow?

I didn't get tested for it between 2018 and 2020, so I'm not sure if it had already disappeared before the bleach. But my mother also had a positive result before (maybe she caught it from me?), and now her result is also negative. So maybe it was the bleach after all?

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.

That's so interesting! I wonder why many people with POIS report significant improvement when they get sick with something else. I've read in this forum that people sick with the flu experience no POIS symptoms while they have it. And gut bacteria gets mentioned very frequently too, who knows if some imbalance in it is throwing something else in us off-balance too and causing the symptoms. I remember I took probiotics after my worst POIS episode (because of the diarrhea that was caused by the antibiotic they prescribed me), maybe it helped me somehow.

If Omega-3 are not effective in reducing tachycardia, may I suggest you to try hawthorn (Crataegus) in case of crisis?

Thanks! I'll keep it in mind. So far, with abstinence and no physical exercise, my tachycardia seems to go away, but the slightest arousal or effort can bring it back. Just a few days ago I got quite scared with how fast and strong my pulse became after a short episode of arousal (around 15 minutes, happened while watching a movie).

[Prospero]

Just a few days ago I got quite scared with how fast and strong my pulse became after a short episode of arousal (around 15 minutes, happened while watching a movie).

Yes, I have this too, but it was somehow already the case in high school, before POIS. It has increased greatly since then, though, and more so while in POIS. Movies, series, video games, speaking in public, appointments, writing something important to someone... I'd say that, for me, omega 3 and magnesium+B6 usually help reducing these problems.
Now my main problem with tachycardia is when I lie down, though. (I'm sure that the problems with abdominals and push-ups were due to the horizontal position.) It's becoming a bit worrying these days, I can't control it anymore with Omega-3 and hawthorn, though it's worse without them. And a new problem appeared since last January, first by short periods but now it's becoming permanent, it seems: when I'm falling asleep my heart rhythm races suddenly, which awakes me and I need to sit down or stand up in order to get back to normalcy. I hope you will not have this, it's really difficult to sleep and I'm completely exhausted.

[BoneBroth]

Just a few days ago I got quite scared with how fast and strong my pulse became after a short episode of arousal (around 15 minutes, happened while watching a movie).

And a new problem appeared since last January, first by short periods but now it's becoming permanent, it seems: when I'm falling asleep my heart rhythm races suddenly, which awakes me and I need to sit down or stand up in order to get back to normalcy. I hope you will not have this, it's really difficult to sleep and I'm completely exhausted.

That happens me too some nights, and often I get a pulse that is like 6 rapid beats and 3 slow beats and continues like that. It seems to be worse when I lie on the right side. Sometimes deep breathing seems to help, but sometimes not.

[IronFeather]

Hi Iron Feather,

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

Hi, Quantum! You're welcome, I hope it can help shed some light on this syndrome. I trust that combining the knowledge of all our symptoms and medical test results we will be able to pinpoint the cause someday (I don't believe anymore that doctors will be able to help us soon, most of them just don't want to investigate). Thanks a lot for taking the time to read my thread!

Hopefully, I found that taking enough potassium (around 16 mEq) and magnesium after sports spare me that awful discomfort.

Wow, that's interesting! I took magnesium pills last summer when my tachycardia episodes started, because combining that with my muscle shaking, my cardiologist thought that I could have a low magnesium level. I didn't notice any changes, but I didn't get any adverse effects from it either, and maybe it helped prevent tachycardia sometimes. In the end, both my magnesium and potassium levels were normal, which is why I think that my shaking is caused by something in the nervous system.

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?

I've tried a lot of different vitamin D supplements to raise my level to normal, but so far nothing has worked. I never got tested for it in my childhood, so I can't be sure if it's low because of POIS or if it's always been like that. I suspect it's related somehow, since I seem to have some kind of problem absorbing the nutrients in food (no matter how much I eat, I'm always hungry and skinny), so maybe I can't absorb vitamin D properly. Given all the digestive problems, diarrhea and probably inflammation of the intestines that I had because of eating soy without knowing I was intolerant to it, I wouldn't be surprised if my ability to absorb nutrients was compromised somehow. When I had a colonoscopy done because of haemorrhoids, the doctor took a sample of the lining and the lab said they observed "inflammation of unknown origin", but he dismissed it saying it could be because of the bowel prep powder I had to take before the test. I'm not sure if he was right, and I wonder if there is indeed some kind of permament inflammation in there.

I do feel a lot better during the summer, but I'm not sure if it's because of the heat or the extra sunlight. I suspect it's the warmer temperatures that make me feel better, as I don't go out in the sun very often, and I've noticed that when it gets suddenly cold some of my POIS symptoms appear (this didn't happen before, it started at the same time that the exercise intolerance did), especially the feeling of having warm skin but being very cold inside, the chills, and the tightness in the diaphragm. Since the vagus nerve is responsible for regulating body temperature when it's cold, I believe it could be the culprit of my cold intolerance.

Recently I'm trying to consistently take in the sun a bit every day, for a minimum of 15 minutes, to find out if it raises my vitamin D levels (I'm also taking drops of this vitamin, that are supposedly five times the amount the body needs daily, as prescribed by a doctor).

Last week the UV radiation was so high that I got slightly sunburnt (my skin is extremely white), but it didn't give me any adverse effects, in fact I feel quite well these days apart from a permanent weakness, and I think it's because of the sunlight and the warmer temperatures (and of course, the abstinence and lack of physical exercise). My acne is also lighter than ever, almost non-existent.

[Muon]

When I had a colonoscopy done because of haemorrhoids, the doctor took a sample of the lining and the lab said they observed "inflammation of unknown origin", but he dismissed it saying it could be because of the bowel prep powder I had to take before the test. I'm not sure if he was right, and I wonder if there is indeed some kind of permament inflammation in there.

Lymphocyte or mast cell infiltrates/activation?
https://poiscenter.com/forums/index.php?topic=2695.msg39068#msg39068

Minor criteria 1 and 3?

https://youtu.be/lrKqlv6VK_w?t=328

What kind of testing did they run on this sample? And how did they know there was inflammation present?

[BoneBroth]

"There are currently over 100 recognized autoimmune diseases [5], including autoimmune liver diseases. One hypothesis suggests that a condition known as ?leaky gut? may play a significant role in the development of all autoimmune diseases [6, 7, 8, 9, 10, 11, 12, 13]."
https://drruscio.com/autoimmune-liver-disease/

[Muon]

What is the origin of inflammation in her gut lining? That should be the main question. And if it's the bowel prep powder why would it induce inflammation? They are using bowel prep powders with a known risk of GI inflammation? Dismissing important clues. I think you should ask the lab for the lab report directly. It needs further investigation.

[BoneBroth]

I think the main question is what comes first; the inflammation in the intestines or the inflammation from the orgasm? For classic auto-immunity I think the gut inflammation comes first (due to stress and/or inflammatory diet) but for POIS maybe the orgasm itself drains the body from certain anti-inflammatory hormones which leaves the inflammatory hormones left which cause inflammation in either the gut directly and/or indirectly by causing inflammation of the liver. When the liver fails to produce bile the bad bacteria grows which cause inflammation in the intestines. A compromised detoxification process liver further adds inflammatory substances to the blood (and intestines). Of course inflamed adrenals, thyroid, hypothalamus and enzyme producing organs would also catalyse the process but I think POIS is mainly a intestine/lives issue caused by frequent orgasms, perhaps in combination with long termed stress and wrong diet, but not those two latter alone.

[Quantum]

I've tried a lot of different vitamin D supplements to raise my level to normal, but so far nothing has worked. I never got tested for it in my childhood, so I can't be sure if it's low because of POIS or if it's always been like that. I suspect it's related somehow, since I seem to have some kind of problem absorbing the nutrients in food (no matter how much I eat, I'm always hungry and skinny), so maybe I can't absorb vitamin D properly. Given all the digestive problems, diarrhea and probably inflammation of the intestines that I had because of eating soy without knowing I was intolerant to it, I wouldn't be surprised if my ability to absorb nutrients was compromised somehow. When I had a colonoscopy done because of haemorrhoids, the doctor took a sample of the lining and the lab said they observed "inflammation of unknown origin", but he dismissed it saying it could be because of the bowel prep powder I had to take before the test. I'm not sure if he was right, and I wonder if there is indeed some kind of permament inflammation in there.

Hi IronFeather,
It has been shown that those with inflammation in the bowels, like those having Crohn's disease and ulcerative colitis, have a decreased ability to absorb vitamin D ( around 30% lower I think).  If your doctor said you have inflammation in your intestine, that would explain at least in part your hard time raising your vitamin D to a normal level.   In those who have absorption problems, like people who had a by-pass surgery of the stomach very high daily doses are given- you could discuss this with your doctor if the already higher-than-normal dose has no effect.
Of course, daily exposure to the sun is a great alternative to Vitamin D supplements.
I read you also have vitamin A low levels.  Both vitamins A and D are lipophilic vitamins, meaning they are absorbed with lipids because they dissolve in lipids (fats), not in water ( the other two other lipophilic vitamins are vitamins E and K).  You also say that whatever the amount you eat, you stay skinny.  Have you been evaluated for lipids absorption problems?
Maybe you are already aware of it, but Vitamin D supplements work best when taken with fatty foods, to help absorption ( https://www.insider.com/vitamin-d-absorption )

[Muon]

@IronFeather:
Does the time of day affect any of your symptoms?
https://poiscenter.com/forums/index.php?topic=3456.0

[Muon]

Chronic inflammation of lining of gut ---> malabsorption? Vitamin deficiencies seen in POISers a clue for this? Inflammation ---> modulation of tight junctions? Something in the mucosal layer could be hyperactive.

[Muon]

Check her september 2016 data. Acetone in urine 60 mg/dL, RR: 0 - 5
She is skinny
She eats for two and always hungry
It seems she burns more fat for energy than glucose because of the ketones in her urine? Glycolysis not working correctly? Is her metabolism hijacked by a pathogen? Does POIS shift her metabolism towards ketosis? Anybody else checked for Acetone?

https://www.quora.com/What-are-all-the-causes-of-acetone-in-urine
"Acetone is one of ketone bodies formed as an alternative fuel in patients of uncontrolled diabetes mellitus (specifically in type 1). Ketone bodies are also formed in prolong starvation, renal glycosuria, glycogen storage disease, etc. In these diseases including diabetes mellitus, excessive formation of ketone bodies leads to ketonemia, which eventually results in ketonuria, i.e. appearance of ketones in urine."

https://en.wikipedia.org/wiki/Glycogen_storage_disease

Could this tell us anything about Lactic acid/Pyruvate and ATP? Any expert around that can shed light on this?

[IronFeather]

Thank you for all the detailed charts and info, Muon. I will have to read and research a bit more on this to understand everything, as I have never studied much about chemistry or biology after high school (I studied mathematics and physics). Also, sorry (to you and everybody else here) that sometimes it's hard for me to keep up with the posts and reply to everything as quickly as I should. I'll try to reply sooner!

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

Thanks for the suggestion, I should have done this from the beginning, considering how long the original file was. I added another file with a summary of my abnormal results a couple of days ago, in the same post. The summary is translated into English, it was doable since it was much shorter than the complete list of results.

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.

I know... I was a bit reluctant to take this vitamin because now I'm feeling quite well compared to the nightmare of the previous months, and I didn't want to ruin it. I've been on abstinence since November and I'm not exercising either, apart from walking at a normal pace for 30 minutes every day so I don't ruin my body completely. This way at least I don't get tachycardia episodes, but my shaking with any effort and the general weakness and tiredness remain. So, I've decided to try and take a B3 supplement and see what happens.

Hmm, nicotinamide and nicotinic acid are different, but shouldn't they be equivalent, metabolically speaking? Doesn't the body convert one into the other and vice versa? I suppose that, if I have a low level of nicotinamide, I should also have a low nicotinic acid level, unless something is wrong in the conversion process. Is it important in which form I take the vitamin? The one I was going to try comes in the form of inositol hexanicotinate (it's the flush free B3 supplement by FairVital), 250 mg per pill. They also have another B3 supplement, in the form of nicotinamide, with 100 mg per pill, so I'm not sure if it would be better to try this one first even if it's not flush free, because of the lower dose. I will update the thread as soon as I'm taking it if I experience any improvement or worsening.

[IronFeather]

Will the Th1/Th2 (IFN-g/IL-4) balance still be measured?

Sadly, no. The lab told me that I should have requested a preauthorisation from my medical insurance company, otherwise they won't cover it, but they didn't tell me this until it was too late. I'm going to start making a list of all the parameters I want to measure the next time I get a blood test done, and see if I can find another doctor to prescribe it in the summer. The doctor I was going to is already tired of me and hinting at psychological issues being the cause of my symptoms, so I won't visit him anymore. I guess he just wants to get rid of a problem he can't solve.

So far I have in my list Th1/Th2 (IFN-g/IL-4), IGF-1, leptin, tryptophan and serotonin. And of course my chronically low vitamin D, and nicotinamide too, if I start taking it. I checked with the lab and they can measure all of these, as long as the insurance company authorises it. If not, I could pay for it myself, I'm willing to do it unless it is far out of my budget.

[IronFeather]

Hi IronF, what induce full blown pois in your case, is this orgasam?
Do you get full pois from high  sexual arousal without orgasam ?
Is orgasam crucial for full pois mode?

Hi, Hopeoneday! Back when I could practice sports, high sexual arousal always caused very mild symptoms for me, usually just a worsening of my acne, but it never made any POIS symptoms appear. Same happened with exercise itself, intense effort (like when I lifted weights or did too many push-ups) used to make my acne flare up. Now that exercise is out of the question, this seems to have changed a bit, and arousal gives me worse and more intense symptoms than before: my heart starts beating very intensely and tachycardia appears, my skin feels very warm even though I feel cold inside, my mood shifts towards a strong irritability and lack of patience with everyone, sometimes my appetite diminishes, and of course my acne flares up like usual.

But of course, it's all much worse with an orgasm. If it's only arousal, most of the symptoms go away in an hour or two, except for the temperature dysregulation and the irritability, that last for a couple of days.

[Muon]

Hmm, nicotinamide and nicotinic acid are different, but shouldn't they be equivalent, metabolically speaking? Doesn't the body convert one into the other and vice versa? I suppose that, if I have a low level of nicotinamide, I should also have a low nicotinic acid level, unless something is wrong in the conversion process. Is it important in which form I take the vitamin?

They both raise NAD. There is a feedback loop running from NAD to nicotinamide. I wonder whether low nicotinamide could indicate low NAD levels. You could take one of these supplements for a while and measure your nicotinamide level again, if it's the same then you could raise the dose (you probably have some kind of malabsorption so a high dose may be needed). There is a difference in the penetration of the blood brain barrier between those forms, you could look that up, I don't have numbers for you. Side note: I wonder if butyrate could help you.

Regarding parameters for blood tests; Just because I have some parameters in mind doesn't mean these are the best candidates. There are more suggestions in the comments of the laboratories thread in the research category. You could make a first selection of parameters and cut it down later. Other folks may have better suggestions. There is also some stuff in the results thread in the research category. You are basically exploring unknown grounds here. I don't want to comment anymore on this forum I'm burned out. Good luck with your journey and again much respect that you came forward with your story on this forum as a female. 

[IronFeather]

They both raise NAD. There is a feedback loop running from NAD to nicotinamide. I wonder whether low nicotinamide could indicate low NAD levels.

Right now I'm trying to find the Niacin 100 mg supplement by FairVital (the active ingredient is nicotinamide) because it's the only one that doesn't contain a huge dose of the vitamin (most seem to have 500 mg per pill). It's hard to find here, but I'm worried of what a high dose could do to me if I don't tolerate it well. I'll update the thread as soon as I'm taking it, and I'll try to measure my levels again to see if there's some obvious malabsorption going on. Regarding this, I've also contacted the lab where my gut lining sample was analyzed, and hopefully they'll send me the results at some point in the next weeks (they said they're very busy with covid tests).

You are basically exploring unknown grounds here. I don't want to comment anymore on this forum I'm burned out. Good luck with your journey and again much respect that you came forward with your story on this forum as a female. 

Thank you so much, Muon. I totally understand you feeling burned out, it's so frustrating to spend so much time trying to solve this, and you've participated in this forum a lot and helped so many people with your ideas, info and suggestions, including me. Thanks a lot for all you've done. I wish you all the best and I hope we'll see you around here again!