0 Members and 2 Guests are viewing this topic.
Good work in contacting Dr Schweitzer demografx!It would certainly be very exciting to have Dr Schweitzer looking further into POIS. A great number of people could benefit from potential POIS treatments!
Thanks so much Demografx. In fact, I have been in contact with Dr. Waldinger. He said a couple months ago that he would have another paper in 6 months (according to him there is hope and that we have to remain patient); I didn't explicitly mention his name because I didn't want to unfairly raise hopes. He knows about this thread; a second outside reminder would probably be a good thing though! There is also another MD PhD who "definitely" wants to study our case. He also said he would be willing to take on a graduate student for this, if anyone is interested. I intend on showing them our survey results.Great work everyone.
Absolutely fantastic Demografx !!! Many thanks for this. I've read the paper kindly sent by Pyropeach and i was very surprised. I knew all the story on Dr Waldinger and POIS by this forum but it's an other thing to read it for the first time. I'm looking forward to read them again. And even if this is going nowhere, you've tried, this is the main thing. After all these years of misery one more deception won't be so terrible, we just have to continue in the same way.Girlwind i wanted to do this test after your initial post. It will be interesting to do it again after you take the supplement. (I can't find where it's written 16mcg of iodine.)I'm not sure if you've done an other test for the thyroid, it should be showing something if the tincture test is meaningful.
Quote from: hurray on 19/09/2008 01:46:17Good work in contacting Dr Schweitzer demografx!It would certainly be very exciting to have Dr Schweitzer looking further into POIS. A great number of people could benefit from potential POIS treatments!Hurray, I hope it's ok with you, I'm sending your post to Dr Schweitzer as an indication of the interest here.
Counterpoints, I really hope we can get the experience of Waldinger-Schweitzer on board. As to other researchers, they would have to start from scratch. Please don't get me wrong, if we can't get the experienced team on board for whatever reason, timing, priorities, etc., then we should absolutely keep looking for people in endocrinology/internal medicine.My only concern is for the possibly steep learning curve of someone unfamiliar with POIS. Even Dr Waldinger took a few years to understand POIS patients' complaints and symptoms.
I think we should have as many serious medical researchers looking into this as we can get, even if Waldinger-Schweitzer are also investigating. It will offer additional expertise and perspective. And a researcher could catch up on current progress very quickly - it's what's demanded in their profession.I'm very excited by all this though. . I agree it would be wonderful to have Waldinger and Schweitzer helping us.
The only thing that worries me is that we might get our hopes up too high about the idea of definitive "CURE"for POIS. Having been through the roller coaster ride of CFS for 30 years, and having had so many potential hopes forcuring that turn sour, with minimal or no results, I fear that we may be really disappointed if these experts don't have the big cure for POIS that we want so badly. Maybe it might be better emotionally to frame it up with a wait and seewhat they have attitude. I just don't want us to feel devastated, if they fail to give us the silver bullet we want.
Demografx, normally that is the case for me too, NE = orgasm. I am stumped as to what is going on here, sorry I have no answers, perhaps we will know in time.
For me nocturnal emission and orgasm are causing severe pois.But i can notice some differences between the two :NE occurs while sleeping, wake me up, and put me in an awful state of insomnia with a strong desire to sleep but it isn't possible because of a racing mind for the rest of the night(very pronounced symptom). I think NE stop an important phase of sleep. After NE i'm more depressed in the next days, it's really unbearable. I'm not sure of the following because usually i avoid nocturnal emissions (by having orgasms instead), but i think NE cause a bit less physical fatigue and a lot more mental fatigue/depression than orgasm.
Schweitzer-Waldinger update==============================================================To all:I was a tad disappointed with the "Dear Sir" from Schweitzer and the simple pass-off to Dr Waldinger (although Dr Schweitzer yesterday on the phone clearly emphasized that Dr Waldinger is the prime conceptualizer and Dr Schweitzer is only the implementer)Am I being too sensitive?
No, Demografx, you're not being too sensitive. This is why I would like to urge emotional restraint, when it comes to getting these researchers' attention. We have all been in such need of help for SO LONG for this malady-without-end. So it's real tempting to get overexcited by the possibility of hope for that illusive POIS cure. At this point, that's ALL it is. There is no promise of any-thing more than that YET. Which is not to say that real good things aren't on the brink of happening, but rather that we are in the process of finding out what might happen next. Everybody loves certainty, me included, but life is rarely that generous.
It's hard not to get excited when the likes of Dr Waldinger and Dr Schweitzer are aware of our efforts!It's a positive move for Dr Schweitzer to have spoken to Dr Waldinger, who has invited you to e-mail him. While we may be desperate to seek cures for ourselves, POIS is only one part of the professional lives of these two doctors, and they may not be able to invest significant amounts of their time in POIS research at the moment.The very fact that this large forum exists is proof to the doctors that many people suffer from POIS, and that their POIS research was a significant discovery.I'm sure that this forum will be a very valuable resource for Dr Waldinger if he follows up his POIS studies - I look forward to being able to support him in his research when his professional duties allow him the time to do so.Thanks for your continued fantastic work on this forum, demografx - the more we can raise awareness of this issue, the more likely it will be that medical professionals will add their expertise to our efforts
I'm not arguing, girlwind. I'm just suggesting that too much conservatism can lead to pessimism, but there is much evidence that success is attainable in the not too distant future.
I am cautiously optimistic. I've been promised too much too often with CFS to be jumping up and down with glee just yet. But I am happy that we are making progress on this journey.
There is also another MD PhD who "definitely" wants to study our case. He also said he would be willing to take on a graduate student for this, if anyone is interested. I intend on showing them our survey results.Great work everyone.
Not all is lost Demografx. And maybe we'll have help from Dr Waldinger. Not necessarily in the forum but in a further paper. If he decide to post here he'll be very welcome. It's a long way to go!
i thought Dr Schweitzer passed all to Dr Waldinger and didn't want to participate here... I'm going to sleep !
Has anyone noticed any seasonality to their symptoms? ...I had some symptom-free NEs this summer which I attributed to my addition of raw garlic to my diet....I had some minor symptoms recently after orgasm.
Has anyone noticed any seasonality to their symptoms? I had not previously made any association with POIS and time of the year, but I am just curious about it now.
Girlwind i wanted to do this test after your initial post. It will be interesting to do it again after you take the supplement. (I can't find where it's written 16mcg of iodine.) I'm not sure if you've done an other test for the thyroid, it should be showing something if the tincture test is meaningful.
Demografx, yes it could indeed be the garlic that produced the results, but I am just speculating on another possibility.
Has anyone noticed any seasonality to their symptoms? I had not previously made any association with POIS and time of the year, but I am just curious about it now. After watching the video of Dr Holick I am wondering if there could be a link. http://www.uvadvantage.org/Home/AudioVideo/tabid/69/Default.aspxI had some symptom-free NEs this summer which I attributed to my addition of raw garlic to my diet. Garlic may indeed have been what helped me, but I am realizing that that was the time of the year of maximum vitamin D production by the skin. Reading back in the forum I claimed my success on July 26th, and July was a really nice month where I live, lots of nice weather for me to get out in the sun. August and September have been mostly wet and dark, and therefore less time was spent outdoors. And as I mentioned, I had some minor symptoms recently after orgasm. I am therefore wondering if lower serum vitamin D levels might be a cause. Although I have never associated POIS with seasonality, I have indeed noticed that my double vision problems always arose in the springtime, a time of the year when the body has been apparently running off the vitamin D “storage tank” all winter.
I'm getting between 50-75% relief from all my adrenal and thyroid boosting supplements, and only taking one day to recover.
Quote from: girlwind on 22/09/2008 23:07:55I'm getting between 50-75% relief from all my adrenal and thyroid boosting supplements, and only taking one day to recover.girlwind, this is wonderful news. If it's not too personal, can you say on how many occasions you've experienced this relief?
I'm getting between 50-75% [POIS] relief from all my adrenal and thyroid boosting supplements, and only taking one day to recover.
girlwind, this is wonderful news. If it's not too personal, can you say on how many occasions you've experienced this relief?
Actually the last three times. And I'm just beginning to get on top of the thyroid problem.
Congratulations, girlwind, this sounds like a breakthrough! And unlikely that it's a placebo effect 3X! Or are you still cautiously optimistic? 
Congratulations but can you detail more the supplements you take ? I have not really understand : the supplement you talked is the seaweed ?
It will probably have to be 300X consistently, before I can claim that I have found a definitivesolution.