Author Topic: Chart of POIS Types and Their Possible Relief Methods (ongoing project)  (Read 114748 times)

Quantum

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Re: Chart of POIS Types (ongoing project)
« Reply #80 on: February 18, 2018, 07:02:38 PM »
CBD oil. It has to be purified 20% cbd oil. There is a guy who has been succesfully treated by over the counter 3,5% cbd oil, but it didn’t help me. For the 20% cbd oil. Start with 1 drop before going to sleep. The next morning 1 drop and at night 1 drop. The next morning 2 drops and the at night 2 drops. The cbd oil will work after 2 weeks. I didn’t had any POIS-symptom. But when you stop with the oil the POIS comes back. The 20% oil was at that time very rare. So after 2 months I was out of CBD oil. A few months later I get new cbd oil. But when I started I used 4 drops in just a few hours. I got allergic and got sick. After 6 months (last week) I started with 1 drop. It went well. Two days later again 1 drop. But I got sick again. So my allergy for cbd oil isn’t still over.

Symptoms: flu like symptoms, feeling cold, extreme fatigue, exhausted, palpitations, problems finding words, incoherent speech, dysarthria, concentration difficulties, quickly irritated, can not stand noice, photophobia, depressed mood, headache, itching eyes, painful eye, congestion nose, watery, runny nose, sneezing, white tongue, dirty taste in mouth, dry mouth, sore throat, muscle tenstion in back and neck, muscle weakness, pain muscles, stiffness muscles.
No NE, no PE.
Symptoms for 1 day, used to be 4 days.
Symptoms worse when I don’t ecajulate after sexual activity.

Thanks for the details, Vandemolen.  I have now created the new section in the chart about CBD oil.
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Quantum

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Re: Chart of POIS Types (ongoing project)
« Reply #81 on: February 18, 2018, 07:22:07 PM »
Desenz has helped people with their symptoms so I don't see the reason why you wouldn't include it. You could add for example a notification that this method is barely accessible. There are also other reasons why he dropped this treatment, because it is time consuming and thus expensive.

Hi Muon,

As you may know, I am not supportive at all of the desensitization tretment with sub-cutanous injections of own semen.  I will not go into all the details here, because this is not the purpose of this thread. But, after 10 years, and very few reports of real success with this method, which has many disadvantages to say the least, I think we have to go beyond it and give it the less exposure possible.

Why, in my opinion?  Because, contrary to what you seem to express in your post, desensitization is totally associated to allergy treatment, in medical science ( https://en.wikipedia.org/wiki/Allergen_immunotherapy ), and I think it is time that POIS gets out of this "allergy to semen" tag.  POIS is so rarely talked about anywhere, that when it will be again, I surely hope this misleading tag will not be mentioned anymore.  And there is so little information leaking to doctors and researchers about POIS, that it is totally unwanted to nurture the strict allergy theory, which will only report real development in POIS research.

You may have your reasons to try and convince me to include desens in my chart, but scientific rigor is not the one that could do it for me.  For example, the POIS Chinese study has demonstrated that the Prick tests with own semen are non-specific, since a proportion of normal subjects in the study have tested positive in this prick test.  From there, the "objective" basis of the desens protocol in POIS is already, in my opinion, been weakened, if not voided. But as mentioned, I won't go further in this discussion.

However, I am not totally closed to the opinion you have expressed, and have included a note at the end of the chart, about desensitization.  That is as far as I will go. 

« Last Edit: February 18, 2018, 07:24:07 PM by Quantum »
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Muon

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Re: Chart of POIS Types (ongoing project)
« Reply #82 on: February 18, 2018, 08:15:14 PM »
That's ok, I don't want to make a big deal of this. I'm just a bit stunned about not adding this because in science you collect and document all data even if it doesn't fit the model of the scientist. It makes you wonder whether patients who underwent this treatment have been taken serious at all.

swell

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Re: Chart of POIS Types (ongoing project)
« Reply #83 on: March 02, 2018, 04:33:12 PM »
Very very good work.  Thank you very much Quantum for creating this wealth and very nice thread.  My english is not best so pardon.  My POIS symptom are:
1. Skin related #1 - huge, jaundicey skin and eye, swelling is big you can see it.
2. Muscular weakness - trouble doing exercise.
3. Mental related - feeling low, brain fog.
Quantum I notice not many here have skin issue like me but most have 2 and 3.  Do that mean I have something extra plus POIS?





« Last Edit: March 02, 2018, 05:13:07 PM by swell »
POIS Free, 2+ yrs (occasional/predictive lapses)
Pois symptoms: Peripheral (Skin: Urticaria, dryness, pale blotchy skin), Exasperation of: [Nerve weakness, Muscle weakness + Mental (CNS: Brain Fog, Irritation, Isolation, Speech lethargy, Anxiety)].
Other conditions: ASD, ADD, GA

Hopeoneday

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Re: Chart of POIS Types (ongoing project)
« Reply #84 on: March 02, 2018, 05:33:37 PM »
Hi Swell, i am traying to figure conection vith some cases who are suscesifuly recover fom pois an trying compare symptoms.
In the nakedsciencists forum Herman(gbolduev) is cured by balacing trace minerals.
He is talking that pois is coused by minerals imbalances and coper tocsicity.
And i conetceed that to jaundice, and this can be conected  to ceruloplasmin an this i conected to this - https://labtestsonline.org/tests/ceruloplasmin loking those symptomes i hawe all of tham aspeshualy swalowing and walking difecultis but i hawe no visible jaundice.
And i conectet this to one ayurvedic doctor who cured Nathan from nackedscientists
and he say that nathan hawe (Also wanted to add to your post, when Nathan was in POIS his Ceruplasmin was low. After recovering from POIS, his Ceruplasmin level reached normal.) https://www.thenakedscientists.com/forum/index.php?action=profile;area=showposts;u=39528
Maybe is here solution for some of as.
« Last Edit: March 02, 2018, 06:49:01 PM by Hopeoneday »
Dr-pois.

Quantum

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Re: Chart of POIS Types (ongoing project)
« Reply #85 on: March 03, 2018, 09:15:52 AM »
Very very good work.  Thank you very much Quantum for creating this wealth and very nice thread.  My english is not best so pardon.  My POIS symptom are:
1. Skin related #1 - huge, jaundicey skin and eye, swelling is big you can see it.
2. Muscular weakness - trouble doing exercise.
3. Mental related - feeling low, brain fog.
Quantum I notice not many here have skin issue like me but most have 2 and 3.  Do that mean I have something extra plus POIS?

Hi swell!

Thanks for your words of appreciation !   :)

I have noted the exact same thing you did notice.  You may be interested in my post form some years ago about clusters of symptoms in POIS:  http://poiscenter.com/forums/index.php?topic=2027.msg15927#msg15927 .   In the section at the end, called "Some patterns I have noticed", you will see that the cluster of allergy-like symptoms ( which includes skin reactions) is more rare that the others, and never occurs alone, meaning by this that POIS sufferrers who gets skin symptoms, for example, always get others symptoms as well, like muscular symtpoms, cognitive symptoms, etc...  I never sw a POIS sufferers with allergy-like symptoms only.

Those clusters helped me to understand my own sub-type of POIS, because I have no cognitive symptoms, but a lot of emotional symptoms, so I thought that each individual POIS set of symptoms, for each specific POIS sufferer, seems to be "build" with symptoms from one or more of these clusters, and from one POIS episode to the others, the symptom kit seems to be pretty much identical, so that if you never had any allergy-like symptoms, for example, you are not likely to develop some in the future.  My hypothesis is that each cluster of symptoms is related to a certain set of physiological event, to certain weakness in our genes, immune system,  or else, and we may have one clusters, 2 of them, 3, or even 4, but it depends on which problems we have or not in our body and brain.
« Last Edit: March 03, 2018, 09:31:14 AM by Quantum »
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Quantum

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Re: Chart of POIS Types (ongoing project)
« Reply #86 on: March 03, 2018, 09:25:41 AM »
Hi Swell, i am traying to figure conection vith some cases who are suscesifuly recover fom pois an trying compare symptoms.
In the nakedsciencists forum Herman(gbolduev) is cured by balacing trace minerals.
He is talking that pois is coused by minerals imbalances and coper tocsicity.
And i conetceed that to jaundice, and this can be conected  to ceruloplasmin an this i conected to this - https://labtestsonline.org/tests/ceruloplasmin loking those symptomes i hawe all of tham aspeshualy swalowing and walking difecultis but i hawe no visible jaundice.
And i conectet this to one ayurvedic doctor who cured Nathan from nackedscientists
and he say that nathan hawe (Also wanted to add to your post, when Nathan was in POIS his Ceruplasmin was low. After recovering from POIS, his Ceruplasmin level reached normal.) https://www.thenakedscientists.com/forum/index.php?action=profile;area=showposts;u=39528
Maybe is here solution for some of as.

Hi HOD,

Comparing successful relief method, and corresponding symptoms, is one of the goal of this POIS Type Chart, so I am glad you  are doing you own research along these lines.
Let me know of your results with your current experimentations.

(p.s.:  I am leaving today for about 10 days, so, will not be posting again till mid-March when I return )
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fernab

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Re: Chart of POIS Types (ongoing project)
« Reply #87 on: October 31, 2018, 06:03:06 AM »
Hi,

I don't know exactly to which type of the ones described in this chart I belong to. I have not tested all the relief methods yet. But some of them yes. For example, celecoxib and etoricoxib (NSAID's). They relief me. But it seems that less and less over time. Some antihistamins had also improved me some symptoms, for example insomnia. And also gluten free diet. So it seems my case is a mixture of 7, 8 and 11. As far as I know for the moment.

I've been wanting to try niacin for a long time. but because one of my symptoms is inflammation of the blood vessels. I have a varicocele that I never had before POIS. A varicocele is a testicular varix. In fact, when my symptoms generally improve or decrease, the varicocele also decreases, even disappears. and vice versa, when the varicocele gets worse it becomes bigger and more annoying / painful. due to this condition of venous inflammation. I have not gotten to try niacin yet. because I know it's a vasodilator. and maybe it would make me worse in that aspect (the varicocele and in general). But I do not know. I've been waiting for a time when the varicocele is very diminished or barely present. but unfortunately, since I rode on a sled, my POIS has taken a very strange direction. I'm not sure if I'm the only case like that ... but I'm in a really difficult situation due to that change of course of my POIS at the end of February.

Akaliko

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Re: Chart of POIS Types (ongoing project)
« Reply #88 on: November 27, 2018, 04:03:35 PM »
Hi all, today I purchased CBD oil (physical store) in the hopes that it might help with my symptoms.
The same product is listed here: https://selectcbd.com/collections/frontpage/products/lemon-ginger-cbd-drops-1000mg

Vandermelon recommended 20% pure CBD oil, but the retailer didn't know what I meant by that, and had only the above product to offer.  Am I right that this is 100%?  If so, what would be the appropriate dosing?

Vandemolen

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Re: Chart of POIS Types (ongoing project)
« Reply #89 on: November 27, 2018, 05:28:24 PM »
Hi all, today I purchased CBD oil (physical store) in the hopes that it might help with my symptoms.
The same product is listed here: https://selectcbd.com/collections/frontpage/products/lemon-ginger-cbd-drops-1000mg

Vandermelon recommended 20% pure CBD oil, but the retailer didn't know what I meant by that, and had only the above product to offer.  Am I right that this is 100%?  If so, what would be the appropriate dosing?
No it’s not 100% cbd oil. That is not possible. Even in the greatest labs they can’t make it 100%. And yours contains lemon, ginger and coconut oil. I would buy an oil with only cbd oil. Of course they use olive oil or something else with it. But if you already bought this one I would try it. Start with 3 drops. If you are allright after 1 week then go to 5 drops. Wait 2 weeks in total before you have a sexual activity.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Quantum

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Re: Chart of POIS Types (ongoing project)
« Reply #90 on: December 02, 2018, 10:34:02 AM »
Hi,

For all newcomers that may not have stumbled on it yet, I suggest you take a look at my POIS Types Chart at https://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448 ( at the beginning of this thread)

You can find there methods that have brought significant relief of POIS symptoms to other members, on the long term ( at least over 2 months), so that it shows it is not linked to placebo effect.

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Muon

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Re: Chart of POIS Types (ongoing project)
« Reply #91 on: November 12, 2019, 10:57:15 AM »
I'm missing Animus' surgical procedure on this list.

Quantum

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Re: Chart of POIS Types (ongoing project)
« Reply #92 on: November 12, 2019, 06:12:27 PM »
I'm missing Animus' surgical procedure on this list.
Good point, Muon.
For the five first years I had been here, Animus was inactive on the forum, and it was not possible to verify if he was still POIS-free, and what exact surgery he had.  Now that he made a come back a few months ago, and that we had fresh information, it could be possible that I create a "Type of POIS responsive to Surgery".   I will look into that in the coming weeks, when I will have more time.  This will need to be very precise in the information given, with some clear warning that it is not clear what part of his extensive surgery was the one that got rid of POIS.   For example, removing the testes was done part because he had a painful lump on one, but not clear if related with cessation of his POIS or not.
« Last Edit: November 12, 2019, 06:14:24 PM by Quantum »
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marrtintintin

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Re: Chart of POIS Types (ongoing project)
« Reply #93 on: February 05, 2020, 04:13:35 PM »
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Ni Vandemolen,

Thanks for the input.

About CBD oil, can you give me some more information, so I can put more detail in the section, like, the dosage you used, the time and method ( every day?  only on POIS days?....),  the Symptoms ti treated, the symptoms it didn't relieved, your main POIS symptoms, etc... like in other sections.  I will surely add a note about your allergy development, and will also underline that CBD oil is not legal in every country.

About desensitization, I don't think I will include it in the chart, because Dr Waldinger himself, who have created this protocol, wrote in his POIS review article of August 2016 that he abandoned this treatment. Moreover, he now speaks of POIS as a auto-immune disease rather than an allergy,  and auto-immune disease are usually not treated with desens ( ( see at http://poiscenter.com/forums/index.php?topic=2346.msg19538#msg19538 for more details) ).  In an interview, he also apologized has being responsible for the misleading concept of "allergy to semen".  So, I think it is not relevant that new members consider trying a treatment method that has no more support in the medical community, that they may never be able to get medical support for, and that is no more studied.  Other methods in the chart are accessible, but desens no longer is.  Dr Waldinger is currently doing new research for a treatment in line with his new way of understanding POIS.
About the desens. I agree with you. I didn’t think that this topic is a list for POIS-patients. I often get pm’s from guys who want to do desens. For more than 1 year I always advice them not to start with desens. Ok my POIS is decreased with 70% and from 4 days to 1 day. But desens is a project for 5 years. I am hopefull that before that time there will be better treatments. In The Netherlands there is a new POIS research that concentrates on the gut (also auto immune theory). It’s a cure, not a treatment. I hope that I can get this cure in 2018 and that it will help me and others. Unfortunately I can’t tell you more about it.

Hi man, any news from the netherlands gut research?

All my best
So happy to be part of this community! Just a year ago, I was alone, nobody understood my “unreal” symptoms.
Digestion problems anyone? (I.e. using toilet every 3+ days) My POIS began as a teenager together with digest
POIS (13 or 7): photophobia, bloating, heavy brain fog, memory loss, muco

marrtintintin

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Re: Chart of POIS Types (ongoing project)
« Reply #94 on: February 05, 2020, 04:32:06 PM »
Hey Michael,
So I tried the supplements I ordered a month ago that I told you about, ( https://www.amazon.com/dp/B00GXD6G92?psc=1 ).
I took 500mg of that pack on empty stomach and waited an hour but nothing happened, I still had pois without a noticeable change.
I'm not ruling out the Pack though; I ordered Zinc, Alfafa, Fenugreek and Vitamin E, and I'll see if all collectively might work.
What do you think ? should I wait more than an hour before O ? should I increase the dose to 1000mg ?

Any success Nas?
So happy to be part of this community! Just a year ago, I was alone, nobody understood my “unreal” symptoms.
Digestion problems anyone? (I.e. using toilet every 3+ days) My POIS began as a teenager together with digest
POIS (13 or 7): photophobia, bloating, heavy brain fog, memory loss, muco

marrtintintin

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Re: Chart of POIS Types (ongoing project)
« Reply #95 on: February 05, 2020, 05:21:04 PM »
P.S. tried my pre-pack last night adding magnesium (tablet is 325 mg magnesium also contains 60 mg of Vitamin B6, manganese 6 mg - cenovis brand)

And fish oil (180 epa, 120 dha- thompsons brand)

Basically no symptoms at all today. Took the prepack last night 1.3 hours prior to release.

Very pleased indeed. If only I had any clue what ingredients actually make the difference. :) Happy to take them all until then!

Hi Michael, any updates on your pre-pack? Do you still use all pf those ingredients, including Fish oil?
So happy to be part of this community! Just a year ago, I was alone, nobody understood my “unreal” symptoms.
Digestion problems anyone? (I.e. using toilet every 3+ days) My POIS began as a teenager together with digest
POIS (13 or 7): photophobia, bloating, heavy brain fog, memory loss, muco

Vandemolen

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Re: Chart of POIS Types (ongoing project)
« Reply #96 on: February 05, 2020, 07:20:08 PM »

Hi man, any news from the netherlands gut research?

All my best
I think it is a dead end. It was a combined research between a Chinese team and a Dutch doctor. Now the Chinese stopped with co-operation.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

marrtintintin

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Re: Chart of POIS Types (ongoing project)
« Reply #97 on: February 07, 2020, 09:44:57 AM »
Awww no ???
So happy to be part of this community! Just a year ago, I was alone, nobody understood my “unreal” symptoms.
Digestion problems anyone? (I.e. using toilet every 3+ days) My POIS began as a teenager together with digest
POIS (13 or 7): photophobia, bloating, heavy brain fog, memory loss, muco

marrtintintin

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Re: Chart of POIS Types (ongoing project)
« Reply #98 on: February 07, 2020, 10:25:17 AM »
Hi Vendemolen, just to confirm: the cbd oil must be 20% pure, how much is that in mg?
Dosage is: 1 drop the first night; the following day 1drop in the morning, 1 at night; next days 2 morning, 2 night. What an expensive thing then, right? Does it solve your POIS completely? And does cbd oil have any secondary effects?
Is it still working for you?
So happy to be part of this community! Just a year ago, I was alone, nobody understood my “unreal” symptoms.
Digestion problems anyone? (I.e. using toilet every 3+ days) My POIS began as a teenager together with digest
POIS (13 or 7): photophobia, bloating, heavy brain fog, memory loss, muco

marrtintintin

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Re: Chart of POIS Types (ongoing project)
« Reply #99 on: February 07, 2020, 12:48:41 PM »
You fogot one group: desensitization treatment. I have 70% less symptoms and only 1 day of POIS. And I am not the only one.

And also cbd oil. Zero POIS with highly pure (20%) cbd oil. Unfortunatly because of an overdose I developped an allergy for cbd oil.

One big difference in POIS types is guys with and without NE/PE.

Another difference is guys who don’t get POIS if they have sexual activity but don’t ejaculate.

Can someone explain what is NE and PE, please? I understand that PE= POIS post-ejaculation?
So happy to be part of this community! Just a year ago, I was alone, nobody understood my “unreal” symptoms.
Digestion problems anyone? (I.e. using toilet every 3+ days) My POIS began as a teenager together with digest
POIS (13 or 7): photophobia, bloating, heavy brain fog, memory loss, muco