Author Topic: My POIS story  (Read 3426 times)

Investigator

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My POIS story
« on: September 25, 2017, 04:09:26 PM »
Hi, everyone - I just joined the forum and want to share my POIS story. This forum is an amazing resource and I believe that one day, we will find a solution and will figure out a cure for this.

I started to have POIS in August 2016. The usual symptoms, lasting for 3-4 days: brain forg, lack of motivation, lack of concentration, activation of the immune system with flu-like symptoms, etc. Also, my testicles shrink to the body and become hard. I saw many doctors and did many lab tests. Here is a short summary of my story:

--I noticed that I had low zink. It was a little below the lab lower norm, but it was below that norm. So, on my own initiative I took zink for a month and felt better but not recovered. With another test later, I saw I had recovered the zink. But then a month later, my zink level was again going down from the value that I had reached (and, yes, I do eat meat). I believe that for us, one of the things happening is that the body loses zink through some nasty process.

--Very importantly, my 17-alpha-OH-progesterone was above the lab norm. Has anyone else tested that? I basically tested a whole bunch of things in a walk-in lab. I tested this twice, and it was again above the norm. A doctor told me this was very strange. The reason is that this hormone is associated with masculinity and one wouldn't think that with my symptoms, I would have it above the norm (if anything, it would be below the norm). For instance, women with high values of this have lots of hairs, this kind of thing.  Another doctor told me that since this is a hormone that comes from the gland above the kidney, I should do MRI for this gland to see if it is OK. I did the MRI and yes, the gland is fine, the doctors say. The high value of this 17-alpha-OH-progesterone is a mystery for the doctors I have talked with. The other hormones that come from the gland above the kidney, Cortisol, ACTH, are within the lab norms. A doctor told me to check it again after some time, to see what it happening.

-- I have low hemoglobin and low Lymph% (both at the lower limits of the lab range). A doctor told me the low Lymph% has to do with immune system, so an immunological explanation of POIS is not implausible. 

-- my "good" cholesterol is below the lab range, while my "bad" one is within norms. My doctor recommended quail eggs - apparently, they are rich in microelements and would be good for the good cholesterol as well (haven't tried these yet).

-- I accidentally tested SCC and got a high value, 3.6ng/ml with lab norms between 0 and 2ng/ml. Has anyone else tested that? A doctor told me this is very strange: apparently, SCC is something that surgeons prescribe before or after certain kinds of operations, and, if there is really a problem, the SCC jumps to a value above 10ng/ml. So, the doctor told me that what he has seen in other patients, the SCC is either within lab range, below 2ng/ml, or above 10ng/ml. So, my SCC is a sign that something is not quite right and the doctor told me to check it again in 6 months. 

After seeing many doctors, I found one who listened to me very very carefully, looked at all of my pages of lab tests (I've done a lot), asked insightful questions, and, most importantly, listened to me carefully about what I have read in this forum. I explained about the Niacin, about the garlic, fenugreek, ashwagandha, alfalfa, gynko-biloba, and everything I have read about here. I had a very long discussion with him and I am glad he took the issue seriously. By the way, yes, I have been reading the forum passively for a long time, but registered just now.

Here is what my doctor recommended, and the good news is that, yes, for me this seems to work, at least it has worked in the past month (one O per week, haven't tried more yet). The following food supplements:

1) Before breakfast: 5ml of https://admedicine.biz/collections/energy-stamina/products/life-multi-factor

2) Before lunch: 5ml of https://admedicine.biz/collections/mens-health/products/male-active-complex

3) Before dinner: 5ml of https://admedicine.biz/collections/mental-health/products/mental-comfort

Before a meal means 30 min before; the bottles have to be kept in a fridge and one has to shake before use and stir in some water.

From what I understand, these contain lots of things mentioned in this forum, like antioxydants, vitamins in the B-group, zink, ashwagandha-type of Ginseng (just not Indian but another kind, Syberean). I definitely plan to keep taking these for half a year at least. If anyone else wants to give them a try, it would be interesting to see what effect they have, please share your experiences here as well. 

My doctor told me that if these do not work, I could try Milgamma or Milgamma-N. Milgamma is prescribed by neurologists and I didn't quite understand what it is doing. But, a friend of mine explained me that (please do not take me literally), if doctors believe that a patient has a neurological problem of some unidentified sort (there are plenty of conditions that medicine is still silent about), when one has gone to many many doctors and noone finds anything wrong with the other organs, then one goes to a neurologist, kind of the top of the Medical Pyramid. And then if the neurologist can't identify what exactly is wrong but believes it is a neurological problem, he prescribes Milgamma. It is like vitamins B-complex but is not water-soluble but oil-soluble and the organism can actually absorb it better. This is to the best of my understanding - a friend explained these to me, not the doctor. But, be careful, the Milgamma may bring about stomach problems.

To sum up:

1) Has anyone tested 17-alpha-OH-progesterone or SCC?
2) If you are looking for a next food supplement to try, you can try the ones prescribed to me, listed above. If they do not work, the next thing you can try is Milgamma.

Thanks so much for the supportive community. I believe the issue is neurological, given the positive effects of Niacin that users here discuss. And I believe that Professor Gerard Amarenco will figure it out, this is a puzzle precisely for a neurologist. If we think about the evolution of the literature and studies, first came Waldinger's auto-immune article, then there were some hormonal explanations, and now the study by a French neurologist. This is also how my own understanding and intuition has evolved during the last year: first I thought I had a flu and a problem with the immune system; then I thought I was lacking some hormone or microelements, and then finally, now I think it is neurological, after all the lab tests.

And a final thought. Medicine, however advanced, is far far far away from having understood the human brain. Neurology is like black-box treatments, certain things have certain effects and treat certain conditions, but medicine doesn't really understand how and why. My hope is that, even if medicine can't understand the reasons and processes behind POIS, at least a cure will be found. I don't care why it works or how, I just want something that does. To find a cure should not be an unreasonable task.

Very importantly, when under POIS attacks and when depressed, remember that people do recover from the condition, in one way or another. Lots of users here in the forum say that somehow, their POIS has disappeared over time, maybe they themselves don't know why, maybe different cures for different people, but, a number of sufferers have recovered. POIS comes and then, under appropriate circumstances that we do not understand, goes. Serious diseases are not like that. So, my belief is that it is something that will, at the end, have an easy, simple cure (maybe some kinds of herbs, maybe some kinds of food supplements, maybe some kinds of vitamins, microelements, yoga, breathing technique - whatever) - of course, it is not easy to find what this cure is, that's the problem. This is the positive thinking on the issue. This observation of mine was also confirmed by my doctor: the fact that it goes away for many people is encouraging.


 

 

MirkoThiel0

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Re: My POIS story
« Reply #1 on: September 25, 2017, 04:53:09 PM »
Welcome Investigator my pois is to strong right now to writhe down a lot, but one question do i have.
How old are you ?

Quantum

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Re: My POIS story
« Reply #2 on: September 25, 2017, 10:29:06 PM »
Hi investigator, and welcome to the forum.  Thanks for having taken the time to register and share your story.

You have done extensive testing.  Since you have found some out of range results, I hope one of these will help find consistent relief of your POIS.

there may be a link between your low cholesterol and your high 17alpha-hydroxyprogesterone, since cholesterol is at the beginning of the pathway the leads, among other things, to 17alpha-OH-progesterone ( see at https://en.wikipedia.org/wiki/17%CE%B1-Hydroxyprogesterone, the biochemistry chart).

At least one other user, Crushgrapes, has reported high 17-OHP .  See his post at http://poiscenter.com/forums/index.php?topic=17.msg21127#msg21127 , and also his many other lab results at http://poiscenter.com/forums/index.php?topic=2434.msg20546#msg20546.   There are for sure more than one type of POIS, but you are at least two POIS sufferers that has a high 17-OHP level. 

It could be interesting to see of other members has that as well.




« Last Edit: September 26, 2017, 08:33:37 AM by Quantum »
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

Jimmy

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Re: My POIS story
« Reply #3 on: September 26, 2017, 10:50:09 AM »
Thanks for sharing ! & Happy you found a relief.

A question: Can you now have an orgasm free of symptoms every week ? Is it reduction in symptoms or no symptoms at all.


demografx

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Re: My POIS story
« Reply #4 on: September 26, 2017, 01:02:19 PM »
Investigator, welcome to the forum!
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

Investigator

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Re: My POIS story
« Reply #5 on: September 26, 2017, 02:29:00 PM »
Thanks for the comments! And for the many useful posts in this forum!

I am 33. This connection between cholesterol and 17-alpha-OH-progesterone is good to know - I will work now on increasing my good cholesterol and do lab tests again to check what happens.

For Jimmy's question: I have a major reduction in symptoms. For the last 4 orgasms (once a week), 3 times I had POIS-symptoms for a day or so (but much milder than what I used to have), and once no symptoms at all. I will keep you updated about how things go after another month. I hope this would be relief for me. It is also true that these last 4 orgasms are right after a month of vacation in nice and sunny climate. But, it is a fact that last month I was enjoying so many POIS-free days. I'll post here any developments over the next months.