Author Topic: IronFeather's case (female, 25 years old)  (Read 9392 times)

Progecitor

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Re: IronFeather's case (female, 25 years old)
« Reply #40 on: June 02, 2021, 01:17:43 AM »
A few years ago I also had bad experience with complex B vitamins, but taking into account the positive experiences of other POISers I recently have started to experiment with separate vitamin B types and soon realized that some of them are actually good (B3 and B12), while biotin (B7) makes me even more ill. Unfortunately at this point it is really a trial and error situation. If you are worried about possible adverse effects you could break a pill into tiny bits and only slowly increase the dosage.

Although your case at first glance seems quite remote from mine, I still found some detail that may be in common.

At one post you mentioned that sometimes in acute POIS you have swollen nodules in your breasts. Although I am a man I often have this problem, still the cause may be different. I checked your blood tests, but I don't see if they have ever checked your estrogen level. A high level of estrogen may also cause similar problems.
https://en.wikipedia.org/wiki/High-dose_estrogen

In my early POIS I was also prone to diarrhea and feverishness, but sometime along the years this changed. Nowadays I usually have a hypothermic sensation most of the time.
Sometimes I also wake for tachycardia in the middle of the night, but for me it is not very serious (about 100 bpm at most). In my case urination and fresh air can surely help to reduce this issue.
You mentioned you don't have mind fog, but rather irritability. Actually in POIS I am quite relaxed and dull and I just can't really care about anything happening. It is true however that when I have a serious POIS I also can't enjoy anything even if it was something that I love to do otherwise.
I also tend to lose weight in acute POIS or at least I need to eat a lot to be able to maintain it. It is also interesting that I develop an unsatiable appetite at POIS onset while you completely lose it.
Although in an other post you mentioned that you are always hungry and skinny.
It may be important to point out that some of your blood tests are actually the opposite of mine. I always have a high urine specific gravity while yours is low. The absolute values are within range, but the lymphocyte/neutrophil ratio is somewhat high for me. In your case this is reversed and also shows in the absolute values. This may also mean that some of the medication I use could be detrimental for you, so be careful if you try those.

Your experience with bleach intrigued me as it may have a connection with PPAR reprogramming. I couldn't find exact proof for this, however I still found an article that seems highly interesting in regard of your case:
https://sci-hub.se/https://www.sciencedirect.com/science/article/pii/S1561541309602441
Some of your blood tests also showed a low serum iron level.
Increased production of O2– leads to H2O2, and nondetoxified H2O2 reacts with Fe++ in a process known as the Fenton reaction to produce toxic ROS. Active neutrophils show high myeloperoxidase (MPO) activity in cardiac tissue, which indicates an inflammatory response. In our study, cardiac MPO activity was increased in both hyperlipidemic and non-hyperlipidemic ischemia/reperfusion (I/R) groups.

It also implicates hypochlorous acid in relation to activated neutrophils.
Neutrophils are major cells involved in ROS production, and they play a role in oxidative injury via the action of NADPH oxidase or the MPO system. Neutrophils produce O2?, which is a ROS. On the other hand, hypochlorous acid (HOCl) is produced largely from stimulated neutrophils via MPO, which catalyses the production of HOCl. HOCl oxidizes cellular molecules including proteins, amino acids, carbohydrates, nucleic acids, and lipids, increasing cardiac damage.
In conclusion, renal I/R injury caused cardiac damage via oxidative stress and inflammatory processes in hyperlipidemic and non-hyperlipidemic rats. Our results showed that fenofibrate treatment prevented cardiac damage induced by renal I/R in hyperlipidemic and non-hyperlipidemic rats by decreasing lipid peroxidation and protein oxidation, and increasing antioxidant enzyme activity.


This is interesting as you tend to have a low urea level, although your creatinine level looks to be alright.
Patel et al demonstrated that the levels of lipid peroxidation and myeloperoxidation, which were increased in renal I/R injury, were reduced to within normal ranges by fenofibrate. They found high creatinine and urea levels in the I/R group compared to the control group.

Fenofibrate is mainly used to reduce cholesterol, but your level is already low, which probably doesn't make it beneficial.
Even though a high level of cholesterol is a risk factor in cardiovascular diseases, however cholesterol is also a precursor for vitamin D and hormones so a low level can be detrimental as well.
Even though fenofibrate seems to be a promising drug no POISer seems to have tested it before, so nothing is really known about its effectiveness.
Just so you know fenofibrate and niacinamide are both PPARA agonists, so their effect may be somewhat similar. Of course they also have other effects as well and this is only a theory of mine so far. Recently I have tested chia seeds and they proved to be somewhat beneficial for me. Chia seeds also have a PPARA agonist activity, so it may be a safer approach to test PPARA agonists, rather than to go with niacinamide right away.

A high monocyte count was also implicated in your case. This may also explain how your Helicobacter Pylori problem got resolved.
In the human organism, HOCl is formed in the reaction of H2O2 with chloride (Cl?) catalyzed by myeloperoxidase (MPO) from phagocytic cells, viz., neutrophils and monocytes. HOCl, being a powerful oxidant, plays a key role in the elimination of pathogenic microorganisms. By virtue of its high reactivity, HOCl comes into contact with many biologically important molecules and thus exerts cytotoxic effects by provoking the development of many severe conditions associated with inflammation.
Activated neutrophils are able to generate in vitro up to 100?uM HOCl. However, the local level of HOCl in vivo can be significantly higher. Indeed, the local concentration of HOCl in the inflammatory focus, calculated on the basis of the data given in, can reach 25-50?mM. Taking into account the potential for the formation of such high local concentrations of hypochlorous acid during a respiratory explosion, it can be assumed that even a large number of HOCl interceptors present in the blood plasma do not guarantee complete protection of RBC from HOCl-induced hemolysis.
Indeed, similar to ascorbate and Trolox, vitamin E, taurine, flavonoids exert pronounced antioxidant effect by virtue of their ability to prevent RBC lysis in oxidative stress. The mechanism of this effect consists in inhibition of lipid peroxidation and protection of SH-groups of RBC proteins from oxidation.

https://www.hindawi.com/journals/omcl/2019/2798154/

Another study further suggested that oxidative stress and inflammation are interrelated as oxidative stress resulting from high ROS can precipitate the formation of inflammation by increasing the gene expression coding for inflammatory proteins, including NF-kB, peroxisome proliferator activator receptor gamma (PPARG), and activator protein 1 (AP-1). Consequently, inflammatory chemokines and cytokines are produced to induce inflammation. On the other hand, inflammation can increase ROS production via several signaling cascades. Polymorphonuclear neutrophils (PMN) is an immune cell that is largely involved in inflammatory processes. During inflammation, they congregate the gp91-phox, which is a catalytic subunit of NADPH oxidase 2 (NOX) and generate more ROS, including hydroxyl radical, superoxide anion, and hypochlorous acid, thereby enhance inflammation through mitogen-activated protein kinase (MAPK), protein kinase C (PKC), and c-Jun-N-terminal kinase (JNK) pathways. Activation of these signaling cascades lead to production of more inflammatory chemokines and cytokines. Therefore, this forms a vicious cycle leading to chronic inflammation and eventually a range of medical conditions, including cardiovascular diseases, neurodegenerative diseases, and cancers.
https://www.mdpi.com/2079-7737/10/4/287/htm

You could also try some potent antioxidants as they are ROS scavengers. Some POISers had success with Sulforaphan, NAC and glutathione.

I am not sure if an iron supplement would be beneficial for you as it could increase ROS production according to the Fenton reaction.

My personal recommendation would be saffron tea as it has many health benefits (e.g. antioxidant). Even though you don't have the mind fog symptom, it may still help you.
Saffron also down-regulates myeloperoxidase (MPO):
In addition, saffron down-regulates the key pro-inflammatory enzymes such as myeloperoxidase (MPO), cyclooxygenase-2 (COX-2), inducible nitric oxide synthase (iNOS), phospholipase A2, and prostanoids.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6535192/
If you are worried about any adverse reaction, you could start with as few as one stigma and slowly raise the number of pieces. About 10-30 stigmas should show a benefit, otherwise it may be not effective for you.
In one of your laboratory tests they actually measured myeloperoxidase, which proved to be negative. You were also feeling very well at the time, which may mean that the measurement was not representative for your POIS state. If saffron proved to be effective this may still worth further consideration.

Muon

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Re: IronFeather's case (female, 25 years old)
« Reply #41 on: July 20, 2021, 03:03:40 PM »
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).
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
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.
As for sigma receptors, I'm a bit worried. When I read that "physiologic effects when the sigma-receptor is activated include hypertonia, tachycardia, tachypnea, antitussive effects, and mydriasis, it resembles some of my symptoms." (wiki)
They are also involved in breast cancer.
« Last Edit: July 20, 2021, 03:19:56 PM by Muon »

Muon

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Re: IronFeather's case (female, 25 years old)
« Reply #42 on: July 23, 2021, 06:20:33 AM »
https://poiscenter.com/forums/index.php?topic=3669.msg41606#msg41606

Inflammation in colon, trouble with Cow and Soy milk:
https://en.wikipedia.org/wiki/Malabsorption#Causes

Edit: IF's July 2018 data indicates abnormal platelets, Prothrombin time and INR. Something wrong with coagulation?
https://en.wikipedia.org/wiki/Coagulation
https://en.wikipedia.org/wiki/Prothrombin_time
https://en.wikipedia.org/wiki/D-dimer
« Last Edit: July 23, 2021, 08:30:09 AM by Muon »

Muon

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Re: IronFeather's case (female, 25 years old)
« Reply #43 on: July 23, 2021, 01:16:17 PM »
The trembling you mention after exercise and muscles not responding properly as discussed in the exercise intolerance thread could be related to a channelopathy. Immune cells might behave abnormal due to this. The triggery behaviour seen overal is something you see in MCAD and channelopathies. More of your symptoms do overlap with mine, maybe I will list them later.

Muon

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Re: IronFeather's case (female, 25 years old)
« Reply #44 on: July 24, 2021, 01:28:11 PM »
I know there's something going on with potassium in my case, as since this worsening happened I've had intense cravings of specific foods, that I could not explain, but later realized were all foods that are high on potassium (potatoes and bananas, mostly).
The sigma-1 receptor as key common factor in cocaine and food-seeking behaviors

Some POISers mention food seeking behaviour in POIS mode especially junk food. Cocaine shuts this Ghrelin(?) mediated behaviour down via Sigma-1 receptor agonism. POIS itself could be an antagonist of Sigma-1 receptor.
Fox improved on banana's (potassium?). He had problems with swallowing food as a kid, this could indicate channelopathy.

BoneBroth

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Re: IronFeather's case (female, 25 years old)
« Reply #45 on: July 25, 2021, 03:25:43 AM »
Edit: IF's July 2018 data indicates abnormal platelets, Prothrombin time and INR. Something wrong with coagulation?

Absolutely! POIS = Thick blood. I've had my blood microscoped at one of the expert doctors here and the result clearly showed that my blood was sticky and thick. That means that the platelets are attaching on top of eachother like a roll of coins (which I clearly saw). He said this is typhical for chronic ill patients and its a result of a chronical inflammation or infection. My chineese doctor also sais my blood is thick and thats the cause of all my health issues.

It seems that the substance that make the paletes stick together and become "thick blood" is called fibrin. The sticky fibrin is involved in wound healing and cell repair, but when overproduced (in chronic inflammation) it makes the blood thick which makes it not functioning properly and cause issues like headache, varicose veins, slow wound healing etcetera. The plaletes stack into long spikes. "This 'grainy' blood now rubs against your arteries sensitive lining, doing damage every time your heart beats". This makes sense! On POIS the body (blood vessels, organs, brain etcetera) becomes inflamed so more fibrin is produced untill the blood becomes sticky and thick. Imagine what damage this does if we are in a constant POIS state.

The sollution?
Well besides of working on lowering the POIS there are actually some "quick fixes" that break down fibrin (increases the fibrinolytic or antiplatelet activity) and some of those are:

- proteolytic enzymes (there are obviously products with this, see below)
- rasberries (antiplatelet activity + fibrinolytic activity)
- tomatoes (antiplatelet activity)
- green beans (antiplatelet activity)
- grapes (antiplatelet activit)

So we might use this information to make the perfect anti-POIS-symptom-smoothie! I will sure put more rasperries in mine now!

The microscope doctor also had a special drink formula with about 10 diffrent substances like vitamin c, MSM, magnesium/calcium etcetera (I can specify if someone is interested) which made the plaletes free oneself from eachother. Just 20 minutes after drinking this we looked at my blood again and it was not as sticky anymore! I felt better too. The effect lasted for some hours but the drink should be taken every day over some month for long term effect. It tasted so bad I had to stop drinking it but now I'm thinking of doing it again. POIS is still worse than the tast of that drink.

https://losethebackpain.com/hypercoagulation-hidden-heart-attack-risk/
https://pubmed.ncbi.nlm.nih.gov/21311321/
« Last Edit: July 25, 2021, 03:32:34 AM by BoneBroth »

Iwillbeatthis

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Re: IronFeather's case (female, 25 years old)
« Reply #46 on: July 25, 2021, 10:16:24 AM »
Check for Antiphospholipid antibody syndrome which is an autoimmune condition that causes thickening of the circulating blood. Antiphospholipid antibodies are used to to diagnose this syndrome, I am positive for 1 out of 3 of the antibodies and have been positive on both times I've tested for them.

Muon

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Re: IronFeather's case (female, 25 years old)
« Reply #47 on: July 25, 2021, 12:17:08 PM »
One person with POIS on reddit improved on vitamine K which is involved in coagulation.

IronFeather

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Re: IronFeather's case (female, 25 years old)
« Reply #48 on: July 28, 2021, 01:23:51 PM »
I wanted to say a big thank you to everyone who has commented here so far. I haven't been able to reply in detail to the latest comments, and I'm really sorry for that. Right now my life is quite hectic, as I'm moving house, finishing a master's and dealing with all the paperwork for a PhD project, so I mostly won't be active here until September-October. When I come back I will try to update the thread with new info and reply to all of you as soon as possible!

In the meantime, I also wanted to throw an idea out there. I've been quite puzzled recently as to why bleach caused me such a catastrophic worsening of my symptoms, as well as exercise intolerance. And then I read the thread on channelopathies here, where there was a discussion on a possible channelopathy of the sodium channels. And I thought, well, isn't bleach sodium hypochlorite? I think something is indeed going on here.

And then, another reason to believe that problems with the sodium channels are involved: I realized lately that since my worsening happened I've been having weird strong cravings for certain foods, especially potatoes and bananas. I usually eat potatoes every day, but if I don't eat them in a particular day, the next morning I'm feeling worse, I tend to have a sugar crash if I let too much time pass between waking up and having breakfast, and sometimes I even feel slightly dizzy. I used to love salty foods, and now, not so much. And since potassium is a sodium antagonist...

No idea what to make of this, but something is going on here. It could explain the bleach thing somehow.
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.

Journey

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Re: IronFeather's case (female, 25 years old)
« Reply #49 on: July 29, 2021, 03:07:24 PM »
I know there's something going on with potassium in my case, as since this worsening happened I've had intense cravings of specific foods, that I could not explain, but later realized were all foods that are high on potassium (potatoes and bananas, mostly).
The sigma-1 receptor as key common factor in cocaine and food-seeking behaviors

Some POISers mention food seeking behaviour in POIS mode especially junk food. Cocaine shuts this Ghrelin(?) mediated behaviour down via Sigma-1 receptor agonism. POIS itself could be an antagonist of Sigma-1 receptor.
Fox improved on banana's (potassium?). He had problems with swallowing food as a kid, this could indicate channelopathy.
In the first day of the POIS I always have trouble swallowing food especially breads it is like the first time I eat a bread in the state of POIS my neck muscles gotta get activated again like they are in lazy mode

Muon

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Re: IronFeather's case (female, 25 years old)
« Reply #50 on: August 02, 2021, 09:54:32 AM »
Moving my posts here via quotes and deleting them from the original location. They were a bit in the way of the original messages from IF's order of posts at the start of this thread.
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."
I wonder about these in your case:
Milk sensitivity + acne: IGF-1
Overproduction of lubricate + colitis: VIP
Low BMI + appetite issues: Leptin
2 Breast cancer and 1 prostate cancer cases in your family. PI3K-Akt-mTOR signaling could be involved, take a good look at figure 2:
Natural products targeting the PI3K-Akt-mTOR signaling pathway in cancer: A novel therapeutic strategy
mTOR activation affects mast cell function. You may want to keep those growth factors in check.
« Last Edit: August 03, 2021, 01:22:57 PM by Muon »

IronFeather

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Re: IronFeather's case (female, 25 years old)
« Reply #51 on: August 03, 2021, 01:10:41 PM »

FROM Community guidelines


Do not use POISCenter as a substitute for, or to give, medical advice

[demografx], are you saying that recommending a dietary supplement like Neuroprotek to another forum member means "giving medical advice"?

I am astounded. What would we do in this forum if we couldn't recommend supplements, vitamins and treatment ideas to each other?

I don't mean to break any forum rules, and I'm sure nor did Muon, but was screaming this in red really necessary?
[yes, IronFeather, you’re absolutely right, I’m removing Screaming Red! - :) Demo :)]
« Last Edit: August 03, 2021, 02:41:06 PM by demografx »
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.

demografx

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Re: IronFeather's case (female, 25 years old)
« Reply #52 on: August 03, 2021, 02:18:39 PM »
But recommending is the job of a “live” & “known” health professional, not a distant internet user.

Even a doctor recommending only over the internet can be unethical!

This Rule has been in place here for the last 14 years, since 2007.

Thanks for explaining, demo! I understand. I just thought it would be different with vitamins and supplements, since they're technically not medications. But okay, it makes sense.

Thanks, IronFeather!

Delighted to have you participate so intimately! Really helps our understanding.
« Last Edit: August 04, 2021, 01:08:08 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: IronFeather's case (female, 25 years old)
« Reply #53 on: August 03, 2021, 02:52:59 PM »

What would we do in this forum if we couldn't recommend supplements, vitamins and treatment ideas to each other?


Excellent question, IronFeather! The way we have done this - - since 2007 - - is to simply
share our own experience of what works and what doesn’t work. This is the most convincing route, since the reader can then make up their own mind - - based on similarities/dissimilarities to the POIS sufferer sharing - -  as to what might work for the reader.
« Last Edit: August 03, 2021, 02:56:42 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

IronFeather

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Re: IronFeather's case (female, 25 years old)
« Reply #54 on: August 04, 2021, 08:27:58 AM »
I wanted to share something that has happened to me this week, and that in my opinion confirms my intuition that something is wrong with my vagus nerve and vagal tone in general, especially since my worsening last year with the bleach.

I'm moving house right now, going back for a year to where I was born, before starting my PhD. It has been a complete mess, with people who had promised to help cancelling at the last minute, so me and my mother were left alone with the prospect of moving dozens of very heavy boxes, shelves, tables, all my gym equipment with weights and a treadmill... Considering my exercise intolerance, I was sure I was going to be extremely sick for days after this. I had got sick with a fever before from just trying to do a couple of push-ups!

Well, for the last three days I've been running up and down the stairs with heavy boxes that I could barely lift, and carrying furniture around. Zero symptoms so far, quite the opposite, I actually feel good! After thinking it over and over, the only explanation I can find is this: I've been talking the whole time while I did all these things. And talking stimulates the vagus nerve! I believe my exercise intolerance is due to my vagus nerve not working properly, so that it's unable to control inflammation.

As soon as my exams are over in September/October, I'm going to test this hypothesis further, maybe this is a crazy idea, but I could maybe build up exercise tolerance again, exercising progressively while stimulating the vagus nerve?

However, my muscle shaking remains the same. Well, actually I believe it has decreased slightly in intensity, but it could be just my wishful thinking.
« Last Edit: August 04, 2021, 08:30:40 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.

demografx

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Re: IronFeather's case (female, 25 years old)
« Reply #55 on: August 04, 2021, 09:46:33 AM »

…I could…build up exercise tolerance again…


I have suffered from exercise intolerance all my life!

ps - IronFeather, I wrote you a message about the vagus nerve, it’s in your PM inbox
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

drop247

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Re: IronFeather's case (female, 25 years old)
« Reply #56 on: August 04, 2021, 09:51:14 AM »
Another possibility is that the positive social interaction resulted in a change in your brain neurotransmitter levels. Assuming you were talking to someone besides yourself  ;)

I have also noticed a profound improvement in my condition after a chatty dinner party or a night talking to friends. I will be interested to hear your resultd from Vagus nerve exercise without any social interaction.

Anecdotally, moving house also leaves me bed ridden for days with POIS-like symptoms.

Prospero

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Re: IronFeather's case (female, 25 years old)
« Reply #57 on: August 04, 2021, 10:06:53 AM »
Same thought as Drop, and same experience with chatty dinner party.

Muon

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Re: IronFeather's case (female, 25 years old)
« Reply #58 on: August 04, 2021, 01:53:20 PM »
Well, for the last three days I've been running up and down the stairs with heavy boxes that I could barely lift, and carrying furniture around. Zero symptoms so far, quite the opposite, I actually feel good!
Factors contributing to symptom reduction

POTS
  • Intens (heavy weights) body building exercises (most of them in flat or inclined position). Short powerful movements, almost explosive with Reps between 3-5. The trick is you need to induce a pump. Need to add more details
Mother:
July 2020: She had to push against a mobile caravan for a short time window with alot of force and felt immediately better afterwards.

mike_sweden

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Re: IronFeather's case (female, 25 years old)
« Reply #59 on: August 04, 2021, 02:03:28 PM »
social interaction is very anti-pois