POiS sucks and. I cant get any answers

[Disaster]

I have two bad illness and POIS on top of it. My gf left me because of all this. My life sucks this all sucks and i have no answers. Nothing is working/helping 

[b_jim]

Mine is not really better. Girl/wifs and work are the things the most difficult to have for a poiser.

[Daveman]

Hey Disaster,

Demo just got back from a meeting with Dr. Komisaruk, and he has come back with a briefcase full of information. The trip was very positive, and the prospect of hope has been rekindled.

At this moment, the information is being "organized", but in the next few days, we'll let you all in in what is and has been going on.

For sure it is evident that although there has been quite a bit of silence from their end, this has no meant that nothing was happening. They have had to put a detailed program together and it is obvious that they didn't take that lightly. They have done their homework and one way or another we are going to get to the bottom of POIS.

So hang on a few more days, and we'll start posting some of the findings.

[Prancer]

This is so great! Thank you for the update Daveman, looking forward to reading the findings!

Disaster, very sad to hear that. Don't worry, I feel seriously optimistic about the research. POIS can be very depressing, but once it goes away, you'll feel so much better, more energy, way more confident and generally very happy about life. Just like it felt before POIS! I have also felt the negative emotions that come with the illness, and it's no fun at all because my emotions are dulled and I feel so terrible. But remember that it's only temporary.

[Samir]

I always tell myself this when life is bad--tomorrow will be different.

I don't try to fool myself and say it will be better, but it always will be different.  And that gives me the strength to live one more day.  Try it.

[Disaster]

Give me some notice on being a Rutgers research patient

[Daveman]

Give me some notice on being a Rutgers research patient

As mentioned, although the actual research hasn't started, the program has been in progress for a while now. The researchers have been designing the program in detail, investingating and developing procedures and preparing for IRB aproval.

It seems that nothing is happening because we have not been directly involved as of yet, but that is coming.

The other thing: the research program is not a treatment program. Being first, may not mean that your POIS will be treated first, or even at all. This is not to say that it may not happen, only that individual patient "treatment" is not the focus. The focus is on identifying, POIS getting to the root of it and looking for an effective treatment "FOR ALL".

Being involved in the treatment program may not even be comfortable. It's a program, that requires that the patient willfully enters POIS (and I think without any remedial resources: niaciin, testosterone, whatever). They will likely evaluate remedial procedures, however the idea is to BE PATIENT.

We are working for the good of the whole POIS community. There will only be 12 individuals tested. These 12 have to be chosen from a list of several hundred candidates (all of you) and for the good of the community. 1) the best candidates have to be chosen (we don't even know which characteristics will be chosen to decide that), and 2) there is rigorous evaluation made to filter out those best candidates, so it doesn't happen quickly.

Rest assured when the time comes to begin the selection process, you will all have the opportunity to apply.

I know this is difficult. The wait is torturous. But it's an inevitable part of a well studied process.

[Prancer]

I agree. Patience is the key to success in terms of finding a cure for POIS. Even assuming someone were to get lucky and find a cure today, research would STILL have to be done on the subject. It's just the proper thing to do for any illness. Our illness must be completely understood regardless if someone comes up with a cure for themselves or others. There is a formality that has to be adhered to if we want to make any real progress. Waiting is hard for me and clearly for others, but it's our only way to a scientifically-proven cure. We can still do everything we can to try to cure ourselves, but in the end proper research will be needed for POIS and there's no way around this. I am very happy that we have gotten this far!

[sameer7777]

THANKYOU DAVEMAN.......

[Disaster]

Sorry I was gone for awhile, but I am still around. The good news is in the last two months I have been feeling 20% better with my other illness. And the only thing new I did was lay out in the sun. For the first time in 10+ years I have a nice tan. I believe that this is all autoimmune for sure and that the sun is key in fighting autoimmune illness. People closer to the equator generally have less autoimmune disease.

I have been try to get in touch with the Rutgers people via email with no luck so maybe next week I will call them. I have just been busy getting other testing done. Had an MRI on my brain Cervical spine. The brain scan was normal the cervical showed lots of inflammation. Need to hear what it means from my doc. For Pois I have been having a little success with reducing days but using L-glutamine before and after O. But everything is still here but instead of 5-10 days it usually lasts 3-4 days. Problem is after the 4 day I end up Oing and it starts over again. Its like when the symptoms leave I forget about it. Also Oing and this pain I think has become a way for me numb myself in stressful situations because after I O I for got more.

Also guys in the last months I have been noticing something that I think causes POIS. And I am wondering if everyone has the same issue. I will make a new post about it. But basically I noticed that most of the areas that hurt me after I O are actually very cold during and after. So if its an autoimmune or mast cell/histamine thing or whatever I believe that it's messing with our regional body temperature. This could have to do with autonomic nerves or with blood circulation. Probably the test should focus on this. Maybe a thermal scan during and after for a few days. Maybe an ultrasound or maybe a nuclear scan. The hardest part would be to try and figure out local BP, you would need a catheter and avg of normal BP in those regions. They do this for kidneys and lungs because the general arm, leg cuff pressures are not the same. As I sit here typing this it is 24 hours after my last O and my nuts are freezing even after I hold them warm them up they are ice cold but they arent tight like if I was actually cold like getting out of the cold pool. So they arent trying to warm up and be tight against my body.  Also guys when you are hard does your nuts get really tight so tight you have to push them down?

Talk you you all soon, be well!