[Chewbacca]

Re: Limejuice

I think that you are on the right track limejuice. I do agree with demographx though that such testing should be done under strict professional controls due to the types of chemicals and hormones that we might have to take. Sounds dangerous. 

However..... I don't see why we cannot do our own research on other dimensions related to POIS. I'm a grad student in psychology and have studied experimental design. I am familiar with how to do research. Why not do our own volunteer study and see if we can't generate some info. I mean, it won't be a simple randomized double blind controlled study, but it might tell us something.

I guess it all depends on who wants to do it. Recently we have discovered a number of "coping strategies/cures" to deal with our POIS. These have included the use of fenugreek, relora, Celtic Sea salt, high protien/low carb diets, Levita, garlic...and a few others that I'm sure I haven't mentioned. Why can't we do our own volunteer study using one of these proposed "cures".

We get as many volunteers/POIS suffers as we can. Set the prescribed independent variable(I.E. fenugreek, solgar brand, one capsule three times per day two days before and two days after orgasm - just as an example) and see what people have to say about there POIS symptoms(dependant variable - we would need a rating scale). It won't be double blind, and we won't be able to compare it to a control group. But the findings will at least be more generalizable than when people take a "remedy" on their own, at different times of day, using different brands, in different amounts, with other "combinations of remedies" and so on and so forth. We have to isolate in order to separate what works from what's crap.

Any volunteers say "I". First we would have to get enough people...5 min would be good 20 would be phenomenal. We could then self administer (say fenugreek, solgar brand). Then report back here with our results. However, I just wanna see if anyone would be interested before we move onto technicalities.

[demografx]

Chewbacca, very interesting idea. I'm just a little concerned about doing that without any healthcare advisor. This is not an attitudinal/psychological study, it's medical.

Along those lines, I think we're at a point where we're seeing different "POIS groups" and they need to be defined. For example, fatigue-primary POIS vs. cognitive-primary POIS.B_Jim for example, does well with protein. I do well with carbohydrates. I suspect there are more differences.

Symptoms do vary and so do reactions to remedies. I think we've seen fenugreek and relora not work for some as an example.

Considering potentially harmful interaction effects, your fenugreek example might be harmful to someone with an unknown underlying condition that is super-sensitive to any oxytocin-like effect. If I were conducting the study, I would feel responsible if I didn't do everything to prevent an adverse reaction.

I don't want to be overly alarmist or negative, but I reacted just as you did to Limejuice's ideas. Excellent, but needs supervision. Even without a study environment, just individual experimenting, medical caution has always been promoted extensively here. In a study environment, that would need to be ratcheted up to medical supervision, in my opinion.

On the other hand, there is "testing" going on all the time now, where it wasn't just 6 months ago and earlier.

I understand the frustration of the relatively slow pace we're at sometimes. But we've probably learned as much as Dr Waldinger and his team over 5 years compared to our less than two year existence.

I think we're getting closer to outside help, including our individual forays with healthcare professionals.

Chewbacca, please understand, I think your ideas and spirit of doing them are great.

[Limejuice]

I'm willing to participate (i've been experiementing anyways).  My only reservation is that on days where work or personal life is important that I obstain from orgasm.

I don't take any perscription or OTC medicines.  I agree with Demo that people with like symptoms should be grouped.

"I"

[Chewbacca]

RE: Demografx

You have some valid points demografx and I respect your concerns. I think though that perhaps your concerns can be eased. I am not asking anyone to do anything without the consent of there health care provider, that would be dumb. If we did do an unoffical "study"{and it doesn't have to be with fenugreek) whatever we decide to do can be okayed with the different health care providers that different forum members see in thier home towns or wherever they reside.

Such a "study" is not really a study anyway. We are not an organization doing research. We would be individuals doing self experimentation in an slightly organized manner in order to gain a minute amount of data about the possible validity of certain remedies. Every person on this forum has the right to do whatever they want as long as they are responsible. This includes checking with your health care provider about taking any kind of a supplement. This forum is the medium through which we share our experience. To that end it is a tool that can be utalized for the benefit of us all. It would be a shame to underutalize that tool. I understand your concerns about the health of forum members as well as issues of potential liability. But the potential remedies that have been proposed are not exactly hard core drugs. Fenugreek is a spice Indians use on thier food!

POIS sucks ass, and I'm willing to do whatever it takes, in a responsibe way, to try and find reliable ways of coping or curing it....without waiting for the "experts" to get off thier asses and do something. Besides, help may never come demo. I'm 27. I need to have sex without feeling like sh1t. I'm not asking people to risk thier saftey. Just asking that if there are going to experiement anyway, that maybe we could do it in an organized fashion to increase the likely hood of knowing that certain remedies are useful...or crap. This would be to everyones benefit. We can help ourselves while we wait for "experts" to decide we are worthy of attention.

As for the two categories of POIS suffers...we can always have people self identify to which group thier most prominent symptoms belong.

[Counterpoints]

Chewbacca,

I think it would be hard to organize.  As far as I know, only one person got a cortisol blood test, after I had posted about it (several times, and with some urgency).  And Chewbacca, help has come, in a sense.  We have an MD PhD, who has agreed to study this.  I'm certainly not against an organized self-study -- a lot of good could come of it. And I encourage everyone to participate. But we need to do things in small, manageable steps.  I'd say filling out the questionnaire would be a first step.  Anyways, good luck.  I would possibly be willing to volunteer.

Also: I notice you haven't filled out the questionnaire?

[martin88]

I avoid to take supplements for now, I'm waiting to have a cortisol test. According to Reuniting, fenugreek can decrease dopamin, I hope it's temporary.

[demografx]

Chewbacca,

Thanks for clarifying your position. What you're saying is, let's do what we do anyway...but get more benefit out of it via more rigid methodology.

If each member of the study lets his/her medical professional know about the study and what they're taking, that sounds better.

Fenugreek was only an example. But we have also discussed harder "drugs"...my Levitra, for example.

But I wholeheartedly understand the frustration of waiting for the outside medical community to arrive (or not!)

As my next step, I will see what one of The Naked Scientists think. They've been around this block many times.

Chewbacca, many thanks for all your thoughtfulness and sense of urgency, not just for yourself but for the whole POIS community!

[demografx]

[Chewbacca], I notice you haven't filled out the questionnaire?

Counterpoints, I was very surprised to see the above note to Chewbacca made public, to be read by those in the survey and out.

I thought that this would be confidential, private information, to be discussed privately!

TO ALL OTHERS: If you think I am being overly sensitive, or I am not too sensitive about this question, please post your thoughts or let me know. I can get overly concerned sometimes! Thanks!

[girlwind]

RE: Self Research

I have already been participating in my own little "research study" with various supplements and foods. I have tested
my hormones many times in the past, as well as recently in September. However, because I avoid orgasm as much as
possible, as insurance against POIS, I don't want to deliberately "test" my POIS. I usually just wait for a nocturnal orgasm
to "happen" as my test. I already have enough on my plate with managing the fatigue of CFS, which is my primary health
issue. And I take A LOT of different supplements regularly (about $300/month), which I'm not willing to stop, when I try
something new for POIS. So any new supplement has to be added at the right time, when my other sypmtoms are stable
enough to allow me to discern the specific effect(s). (In general anything that has helped my CFS has helped POIS.)
So I say "I" with the above conditions.

What I have researched and experimented with so far includes:

Adrenal boosting herbal supplements (schizandra, siberian ginseng, B5 with Vit C)--significantly helpful
Thyroid supporting herbs (Ashwaghanda and iodine rich foods like seaweed and and sea salt)--also helpful
High protein/low carb  diet--overall helpful
Garlic--not noticeably helpful
Relora--caused insomnia, not helpful

What I intend to try next will include:

Celtic sea salt (1/2 tsp in H20)
Solgar Fenugreek seed

[demografx]

Chewbacca's study

I might participate, but I would have to stop Levitra. Also, on December 2, I am seeing a university endocrinologist to see what he says about my condition and if he or the university team can assist this forum.

[Chewbacca]

RE: Counterpoints

What's the link...I would be happy to fill out the survey. Also, in terms of coordination....if it is more convienient I can start a google e-mail group specifically for those interested in coordinated self experimentation.....then we could report our findings here after we are done. It's a piece of cake to create a dumby email address is you want to keep total privacy. A private group would cut down on the "noise" for people not involved in the coordinated self experimentation.

RE: Demographx

Awesome!....I hope the endocrinologist is of benefit. Hope to have you in the coordinated self experimentation

RE: Girlwind

It would be awesome to have you participate even though you will have certain criteria which is neccessary for you to follow in order to maintain your overall health.

RE: Limejuice

Excellent Limjuice...So far it's you, me, girlwind and maybe demografx

[demografx]

Excellent Limjuice...So far it's you, me, girlwind and maybe demografx

Would it screw up the study if I continued Levitra? Painful to think of going back to full-blown POIS if the remedy doesn't work..............

[girlwind]

Excellent Limjuice...So far it's you, me, girlwind and maybe demografx

Would it screw up the study if I continued Levitra? Painful to think of going back to full-blown POIS if the remedy doesn't work..............

That's a hard call to make. You have decide how or if to take that risk.

[demografx]

That's a hard call to make. You have decide how or if to take that risk.

Chewbacca, tentatively, I'd like to see if a "Levitra supplement" can work to boost my partial cure. When you decide which item to try, I'll check with my medical resources to see if there's any negative interaction effect.

[demografx]

CHEWBACCA

Newbie "sgsg777" private messaged me and wants to join your group. He is in the midst of POIS and is feeling desperate. I don't know what else to tell him.

Maybe you can private message him? Moral support. I've already sent him a few reply-private-messages.

He also wants to try the salt-experiment. Right now probably because he's suffering POIS. Again not sure what to tell him.

See, that's my concern with "medically unsupervised". Something as seemingly harmless as salt could have a dangerous outcome for this newbie guy if Counterpoints' theory is right...I'd hate to be the guy to "recommend" that to him!

[demografx]

Girlwind, and Chewbacca, sorry I mixed up the "risk message" above (#208110)...I thought it was from Chewbacca. I corrected it.

[demografx]

SOHAIL aka sgsg777 - WHO IS IN THE MIDST OF POIS - HIS PRIVATE MESSAGE TO ME AND MY REPLY. FEEL FREE TO WRITE TO HIM WITH ANY ENCOURAGEMENT OR IDEAS.

pls demo help me or i will kill my self

PLEASE CALL 1-800-SUICIDE or 911 or IMMEDIATELY GO TO YOUR NEAREST HOSPITAL EMERGENCY ROOM. WE ARE NOT EQUIPPED TO DEAL WITH YOUR SERIOUS PROBLEM.

[Chewbacca]

how do we private message?

[demografx]

how do we private message?

All the way at the top of the screen, you will see "Naked Science Forum"...under the word "Science", you will see "Messages"...click on that...then all the way to your left click on "New Message"...and it should be obvious then as to next step.

The person you're writing to should be in quotes, e.g., TO: "Chewbacca"...the message is standard type and when you're finished just click "send message"

If you're writing to the distressed newbie...thanks!!!

[demografx]

Sohail's (sgsg777) email address that he lists:
gagaitextilesATgmailDOTcom