Author Topic: How far away are we from a cure for POIS?  (Read 6447 times)

auzzie_mikey

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How far away are we from a cure for POIS?
« on: April 28, 2014, 06:57:09 PM »
Hey guys,

While reading through this website and nakedscientist I realised people have been hypothesising and posting about possible cures for POIS since 2007!! Its been 7 years now. Has there been any convincing, sokid research done by tge NORD, Dr. Waldinger?

The most promising theory sounds like hyposentisation, which provides research of 2 individuals. What about the individuals on this forum who have undergone hyposentisation? Any difference or improvements in POIS?

I say this because POIS is a very depressing disorder which I want to cure and I am sure alnost all of you think in the same way.

Regards

Sam

sameer7777

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Re: How far away are we from a cure for POIS?
« Reply #1 on: April 29, 2014, 07:32:16 AM »
no cure yet ...... and we cant abstain the problem we are male .........we need sex ......keep praying to god .......lets hope for the best
pls don't expose me.
AFTER SEX/MASTERBATION (FLU LIKE SYMPTOMS)
1)BACK NECK PAIN GOES TO DOWN SPINE
2)NERVES LIKE SQUEEZED OUT
3)MORNING FEET NERVES PAIN
4)NASAL INFLAMMATION
5)BRAIN FOG
6)DEPRESSION
7)HIGH SUGAR LEVELS (TRIED INSULIN FOR 1 YEAR MAKE ME MORE SICK

FloppyBanana

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Re: How far away are we from a cure for POIS?
« Reply #2 on: May 01, 2014, 05:48:10 AM »


The most promising theory sounds like hyposentisation, which provides research of 2 individuals. What about the individuals on this forum who have undergone hyposentisation? Any difference or improvements in POIS?

Answer: YES
I would read about the topic of desensitisation on thus forum
30 years of POIS. Mytelase after O with Iceman breathing technique.

Egordon

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Re: How far away are we from a cure for POIS?
« Reply #3 on: May 03, 2014, 12:42:18 AM »

The most promising theory sounds like hyposentisation, which provides research of 2 individuals. What about the individuals on this forum who have undergone hyposentisation? Any difference or improvements in POIS?


Hi Sam,

If you poke around on the forums a bit you'll see that there are actually a few active posters who have undergone hyposensitization (more colloquially termed "desensitization" or "desens" around here) and have obtained great result. I, for instance, have probably seen an 85-90% reduction in my symptoms.

There was a great deal of fear mongering regarding the process's (hypothetical) risks about a year ago, so it's not as active a topic of discussion as it once was. But rest assured: desensitization is very effective (for at least some of us) and remains very promising.

We're all waiting to hear more from Waldinger but it's definitely something you should talk to a doctor about, if you're capable of finding one open-minded enough to consider treating you.
POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

BluesBrother

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Re: How far away are we from a cure for POIS?
« Reply #4 on: May 03, 2014, 03:49:45 AM »
We're all waiting to hear more from Waldinger but it's definitely something you should talk to a doctor about, if you're capable of finding one open-minded enough to consider treating you.

I recently had an appointment at Prof. Waldinger's. He listened to my story and confirmed that I have POIS. He then told me that he is not doing hyposensitization anymore (he said that even if he wanted to, he would not be allowed to do so). He said that at the moment he could not help me any further. More research would be needed, for which he is currently lacking the funds. He is very skeptical that the research at Rutgers will bring us closer to a treatment, while he argued that his group would not be too far away from developing a treatment.

Of course, I cannot judge these statements, but we should not put all our hopes in one research project. If we take into account how much research is done concerning other (autoimmune) diseases without having found a treatment (of the causes) yet, there definitely needs to be done MUCH MORE RESEARCH concerning POIS.
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

Egordon

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Re: How far away are we from a cure for POIS?
« Reply #5 on: May 03, 2014, 01:49:52 PM »

I recently had an appointment at Prof. Waldinger's. He listened to my story and confirmed that I have POIS. He then told me that he is not doing hyposensitization anymore (he said that even if he wanted to, he would not be allowed to do so). He said that at the moment he could not help me any further. More research would be needed, for which he is currently lacking the funds.

Interesting. Did he give you any clues as to why he had to stop administering desens?

Van is treated by Goldmeier (I think), who seems to be an an associated physician. I wonder if he has any clues...
POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

BluesBrother

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Re: How far away are we from a cure for POIS?
« Reply #6 on: May 03, 2014, 05:01:17 PM »
Interesting. Did he give you any clues as to why he had to stop administering desens?
No, I have no idea.
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

Stef

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Re: How far away are we from a cure for POIS?
« Reply #7 on: May 05, 2014, 06:20:27 PM »
We're all waiting to hear more from Waldinger but it's definitely something you should talk to a doctor about, if you're capable of finding one open-minded enough to consider treating you.

I recently had an appointment at Prof. Waldinger's. He listened to my story and confirmed that I have POIS. He then told me that he is not doing hyposensitization anymore (he said that even if he wanted to, he would not be allowed to do so). He said that at the moment he could not help me any further. More research would be needed, for which he is currently lacking the funds. He is very skeptical that the research at Rutgers will bring us closer to a treatment, while he argued that his group would not be too far away from developing a treatment.

Of course, I cannot judge these statements, but we should not put all our hopes in one research project. If we take into account how much research is done concerning other (autoimmune) diseases without having found a treatment (of the causes) yet, there definitely needs to be done MUCH MORE RESEARCH concerning POIS.

Blues Brother,

I cannot imagine Dr. Waldinger making even the slightest disparaging remark about the upcoming POIS study to be conducted by Dr. Komisaruk and his team at Rutgers. This would be the epitome of disrespect on Dr. Waldinger's part. Having corresponded with him while I was still working at NORD, there was never a hint of this type of extremely unprofessional behavior on his part.


Additionally, Dr. Waldinger cannot "confirm" that you or anyone else has POIS. There is no diagnostic test for POIS --  no one knows what POIS is, medically. It remains a poorly-defined syndrome.

It sounds like you've misunderstood whatever he might have said to you.

Stef

demografx

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Re: How far away are we from a cure for POIS?
« Reply #8 on: May 05, 2014, 08:23:48 PM »
Thank you, Stef, for that excellent clarification!
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

BluesBrother

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Re: How far away are we from a cure for POIS?
« Reply #9 on: May 06, 2014, 01:22:27 AM »
Dear Stef,

first of all let me thank you for the great work you have done - and are doing - for the POIS community. Also thank you for your comment on my post. Maybe I have been too brief. Let me clarify some things:

I cannot imagine Dr. Waldinger making even the slightest disparaging remark about the upcoming POIS study to be conducted by Dr. Komisaruk and his team at Rutgers. This would be the epitome of disrespect on Dr. Waldinger's part.

Dr. Waldinger did not at all utter doubts concerning the scientific quality of the research which is going to be conducted by Dr. Komisaruk and his team. He, however, thinks that the project at Rutgers is rather going to be basic research and is not going to be as directed towards a treatment as his own research would be. I would not consider this disrespectful. Every researcher has the right to believe that his theory or approach is more promising than another. I was a bit surprised, though, by the confidence Waldinger had in his own potential future research. As I wrote before, I am not able to judge Waldinger's statements. The point I wanted to make in my post was that we need to explore different routes and should not put all our hopes into one study. I am very happy that the study at Rutgers is going to take place. However, this is likely to be only the beginning of a better understanding of POIS.

Additionally, Dr. Waldinger cannot "confirm" that you or anyone else has POIS. There is no diagnostic test for POIS --  no one knows what POIS is, medically. It remains a poorly-defined syndrome.

In principle I agree with you. However, he said to me literally that I had POIS. Being able to "confirm" whether someone has POIS depends of course on one's definition of this condition. If POIS would in Waldinger's view be "defined" as a set of symptoms (which from reading his research seems to be his definition), a large overlap with my symptoms could lead him to "confirm" that I have POIS.

It sounds like you've misunderstood whatever he might have said to you.

I hope I could clarify some points.

BB
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

auzzie_mikey

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Re: How far away are we from a cure for POIS?
« Reply #10 on: June 18, 2014, 07:36:51 AM »
We're all waiting to hear more from Waldinger but it's definitely something you should talk to a doctor about, if you're capable of finding one open-minded enough to consider treating you.

I recently had an appointment at Prof. Waldinger's. He listened to my story and confirmed that I have POIS. He then told me that he is not doing hyposensitization anymore (he said that even if he wanted to, he would not be allowed to do so). while he argued that his group would not be too far away from developing a treatment.

Bluesbrother and other members,

Has anyone been in contact with Professor Waldinger about his research at the current moment? How close is Waldinger to a cure, if he is doing ongoing research for POIS?

BluesBrother

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Re: How far away are we from a cure for POIS?
« Reply #11 on: July 20, 2014, 03:57:35 PM »
I have only had a single appointment at Prof. Waldinger's so far. From what I understood, he is currently lacking the funds to do further research on POIS. He claimed to be close to a treatment and said that if he had the funds, he would know exactly how to proceed.
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle