Limejuice -- I think your story is positive by the way. It's good that some tests are being done even if the results are not being paid attention to that much. Good job and keep up the interesting investigation if possible.
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I get really annoyed by how when a test is normal (in regards to POIS), a physician acts as if this has conclusively proven that there is no reason for the symptoms. And if a test is abnormal, then it is just explained away as insignificant. What does it take to convince them that there is indeed a problem?
Although it's not much of a consolation, Stefanie from NORD indicates that this is not just a problem with POIS. Almost ALL rare diseases get the same reaction. Unfortunately.
I'd like to share results from the seminal plasma hypersensativity test Dr. Bernstein preformed on my samples. According to his tests, no IgE mediated reaction to PSA (the major seminal plasma allergen) was found - meaning the test was negative. He provided test results in graph presentation form that displayed what a positive reaction looks like, what a negative control group reaction looks like, and what my reactions looked like.
This may come as a disappointment to many as it did me. However, there were several outlier reactions, different than the major seminal plasma allergen that Dr. Bernstein tests for, that appeared in the graphs. Dr. Bernstein noted them and attributed them to as an anomaly. However, I feel these reactions indeed be the root cause we've been researching.
A different but related point. I know that I'm allergic to gluten. Everytime I eat it I get headaches, experience heat sensativities, brain fog and concentration difficulties, muscle weakness... Last year I visted the allergist to be tested for gluten allergies. She preformed a skin-***** test and concluded that the test results were negative because the reaction to gluten was only minor.
I feel that my outlier reactions in Dr. Bernstein's test results show that I'm hypersensative to something in semen (even if it's not the 'major seminal plasma allergen').
I plan on following up with these test results.
Ladies and Gentlemen,
Pharaoh... I think your low testosterone could be caused by a pituitary adenoma. I recently read a case similar to yours, where this was the cause. Please see if you can get a contrast enhanced pituitary MRI (assuming your kidney function is good). Have you ever had trouble with managing your weight? This could be relevant.
I am more and more starting to think pituitary adenomas/abnormalities may be the root cause of POIS in many cases. They can affect cortisol, testosterone, sexual function....
I've actually considered that possibility. My uncle suffered from a pituitary disorder, resulting in a growth deficiency and micropenis. My mother, her two sisters, and their mother all suffered from hypothyroidism requiring surgery. I agree with you that pituitary abnormalities maybe the root cause, as not only does it affect cortisol, testosterone, and sexual function as you correctly stated, but also dopamine. According to wikipedia, one treatment option for pituitary adenoma is the use of dopamine agonists. Furthermore, the symptoms of low dopamine are identical to what we experience with POIS: Depression, ADHD, Social Anxiety, and Anhedonia. Thanks for recommending this test. I'm going to try to have one ASAP.
Ladies and Gentlemen,
I took it for quite some time for its intended use, never saw any POIS effect. Didn't work particularly well for its intended use either.
I know what you mean by the great need for relief analogies I think. I felt the same way when I took medications that I interacted badly with, it was hard to describe literally. But I felt the exact same way.
It sounds like you had a bad interaction with it...
CP, forgive me if I'm wrong, but I thought that YOU wrote 1% in wikipedia for our POIS entry? (apart from Dr Dexter's headache study).
I know group still. Considering. Organization. But rules. For new. Forum. Need to be drafted
May be NSF rules but. A little. Lenient
On organization we. Should. Start with. At most five different. Topics. But. Inorder to prevent inactivity due to specifity everybody has to visit each topic. A Nd not just focus on what interest them
Doctor-Patient-POIS-Specialist 3-Way POIS Treatment?
I think credit-card-enabled facilitation could be attractive to a consulting POIS physician who is very remote, e.g., our physician friends in the Netherlands and England, who could conceivably be extremely helpful - for consultative POIS advice - to a USA patient and his local physician.
Dave and I have been thinking of a "3-way" POIS treatment, perhaps to include videoconferencing.(Google/Skype).
And the credit card function tells the POIS specialist that we are not just asking for free advice!
Any thoughts, anyone? Good? Bad? Indifferent?
I agree with what Counterpoints said about starting small and building up as we need. And the idea to keep it generally simple.
i would divide the "Treatments" up:
Conventional medicine, (which covers testosterone, silosodin, progesterone, histamines)
Conventional procedures (which covers immunotherapy, mri, surgeries etc)
Alternative/natural medicines (which covers fenugreek, zinc, garlic etc)
Alternative/natural procedures (which covers fitness, exercises, masturbation techniques, hypno etc)
Also, I tend to agree with Counterpoints. Topics such as these:
'theories' - discuss possible causes
'treatments' - discuss possible cures/treatments
'symptoms' - talk about your POIS symptoms here
'rants' - had a bad day/POIS episode? share it with us
'off-topic' - here you can discuss whatever is on your mind - hows the weather today, what did you have for breakfast, etc