Top Sexual Medicine Doc treats POIS

[Disaster]

I have something great to announce to the forum. In 2 weeks I have a big phone meeting with the top Sexual Medicine Doctor in the world. Yes the world! And he knows about and treats POIS! I am going to try to get him to agree to do a study and talk to him about testing and maybe even speaking to the group if enough people can participate! Anything you all want me to ask then comment below!!

Also I spoke to the person who runs his office and she said a study on the level we need can't be done for $30,000. They said to save money we might just have to all go there, be tested and then just do a retrospective study on our results.  I will talk to him about this. I will get a list of all the specialized testing he runs. He does not take insurance so I will also get a list of the costs. I don't plan to personally see him because I have other illnesses preventing me from traveling.

[certainlypois2]

I have something great to announce to the forum. In 2 weeks I have a big phone meeting with the top Sexual Medicine Doctor in the world. Yes the world! And he knows about and treats POIS! I am going to try to get him to agree to do a study and talk to him about testing and maybe even speaking to the group if enough people can participate! Anything you all want me to ask then comment below!!

Also I spoke to the person who runs his office and she said a study on the level we need can't be done for $30,000. They said to save money we might just have to all go there, be tested and then just do a retrospective study on our results.  I will talk to him about this. I will get a list of all the specialized testing he runs. He does not take insurance so I will also get a list of the costs. I don't plan to personally see him because I have other illnesses preventing me from traveling.

who is he and what country is he in

[Disaster]

He is an American Urologist who deals with every kind of sexual disorder male or female including POIS. I want to get his permission to give out his name first and also to see if I like him. All I spoke to was his office manager. Sounds like he has a large practice and people travel to him from all over the world for for other illness. So I will update after our phone meeting in 2 weeks.

[Limejuice]

Just curious why he wouldn’t want his name revealed if he’s the top sexual health doctor in the world.

[demografx]

Just curious why he wouldn’t want his name revealed if he’s the top sexual health doctor in the world.

Excellent question, Limejuice.

[demografx]

I have something great to announce to the forum. In 2 weeks I have a big phone meeting with the top Sexual Medicine Doctor in the world. Yes the world! And he knows about and treats POIS! I am going to try to get him to agree to do a study and talk to him about testing and maybe even speaking to the group if enough people can participate! Anything you all want me to ask then comment below!!

Also I spoke to the person who runs his office and she said a study on the level we need can't be done for $30,000. They said to save money we might just have to all go there, be tested and then just do a retrospective study on our results.  I will talk to him about this. I will get a list of all the specialized testing he runs. He does not take insurance so I will also get a list of the costs. I don't plan to personally see him because I have other illnesses preventing me from traveling.

who is he and what country is he in

Thank you for asking, CP2

[b_jim]

It's a good thing to see another doctor interested by our condition
But I am a little skeptical. In a first time, you have to see if this doctor can help your personal set of symptoms. We have hundreds of guys here with different sets of symptoms and "remedies".

[Quantum]

Thanks for sharing, Disaster, and keep us informed.

Even if $30000 is not a lot in the research world, it wold be great f this doctor would make the commitment to do a small POIS study and publish it.  This would help to put POIS on the medical research map.

[demografx]

I agree with Quantum. And I would add that $30,000 is not much in the world of medical research, but I suggest that it’s a HUGE accomplishment for a rare, self-funded disorder such as ours.

[Disaster]

I don't understand why you all can't be patient and wait. Smh. I want to make sure I like the guy otherwise I don't want to help his medical practice in any way by having people go to him. I have questions and since I am calling on the behalf of our entire illness community I want to see how much time he will take in addressing my questions. He know Barry from the Rutgers study and he apparently treats POIS patients in his practice already. So why hasn't he started a POIS study already? His office manager explained it a little, but I would rather hear all the answer from the doctor.

I don't know is he will consider doing a smaller study for $30,000 especially after The Rutgers experience. Also I want to hear his take on the Rutgers study. I think it was a waste of money and bad theory. And it ultimately wasted our times so I wasn't so far off.

I want there to be basic testing done. Bloodwork is the natural place to start, most likely male sexual hormones. After that basic anatomical testing is the next logical step. I think ultrasounds before, during and after done on all related male sexual parts including the prostate, blood flow into organs, testicles, groin, lymph system, heart, sinus, etc. very low budget.

The office managers claim is that advertising for the study is expensive. I want to see what the doctors take is. Are they looking to make money off this study or are they serious about helping us find a cure.

Lastly I might set up a POIS medical board so that we don't have to run studies approval through NORD. I would rather have Sexual Medicine Experts decide on studies along with a competent patient Board. The problem is that the office manager told me the sexual medicine community is a small close knit group so off course they will approve each other's research proposals.

Anyway it's more complex then just finding the top Sexual Doctors. I could list 30 top Sexual Doctors just below this one. It's getting them to have the right mind set and be willing to really help us not just help themselves..

[Going less Crazy]

I think the focus should be #1 on inflammation.  I believe that is the source of this issue.  Many people helped by ibuprofen, antihistamines, niacin, diet... They all seem to link inflammation in some shape or form.  So inflammatory biomarkers -> hinting at the source of inflammation which may vary from person to person.

[Disaster]

Going Less Crazy. I personally have Autoimmune disease, but by going straight to what a patient or even 1 doctor theorizes is not how you conduct research. You start with the basics because it is the first of all the cheapest cost and you might get lucky and spot an abnormal testing in all patients. Then you work your way to basic anatomical changes. For example in Rheumatoid Arthritis they do simple X-rays. In heart disease they do simple ultrasounds. All the cheapest first to detect changes. Then later you move on to more complex testing like like complex blood testing. Then you move on to biopsies and other invasive testing. The more complex and rare the testing is the more expensive that research is. For example certain Autoimmune tests like for Lambert Eaton Myasthenia, just one Autoimmune antibody blood test is over $1,500. Multiply that cost by 100 because researchers won't know which antibodies to look for and that $30,000 is gone on one patient.

So need to cross off basic land cheap research to justify more expensive and complex research..

I think it is a matter of raising awareness even further. I estimate the number of POIS patients worldwide to be over 100,000. In America maybe 35,000. Probably about 750 -1,000 who have it know what POIS is. And I have yet to meet a doctor that heard of it besides this one doctor I am about to talk to. And I am not sure just how much he really knows about it.

[Disaster]

I think the focus should be #1 on inflammation.  I believe that is the source of this issue.  Many people helped by ibuprofen, antihistamines, niacin, diet... They all seem to link inflammation in some shape or form.  So inflammatory biomarkers -> hinting at the source of inflammation which may vary from person to person.

Why do you think Antihistamine, Niacin and diet translate to inflammation? Also inflammation never leads to a cause it is just a symptom. Almost every illness known to man causes inflammation but steroids and NSAIDS besides being terrible longterm doesn't cure all disease. Someone can have a tapeworm, a fungal infection, a bacterial infection, an Autoimmune illness or Lyme disease and they will all be positive for inflammation... just saying

[Going less Crazy]

Look at inflammation and see if the source (cause) of it can be found through tests or whatever... sorry if I screwed up on my point since I'm typing cellularly. The source can be different from person to person. IMO all these treatments seem to link inflammation in some shape or form and the cause is yet to be found in many of you.  Just my opinion.  Inflammation can lead to a cause if you figure out you have it, than go through all of your options from there to see if your inflammatory biomarkers go down.

But I don't know how research is done so just disregard my posts.

[Disaster]

The call got pushed back to next week. Will update

[Disaster]

I spoke with the top Sexual Medicine doctor tonight and unfortunately I was not satisfied that he understood POIS or wanted to make an effort to understand it. Allow me to explain. He claimed to treat POIS but he doesn't look at POIS as a separate illness, he lumps POIS with all male sexual illness such as painful ejaculation, arousal issues like being unable to become flacid after Orgasm. He doesn't believe in hormone problems, Autoimmune theory, or any other chemical. He claims all of these male sexual problems are due to a herniated disc in the spine. I asked him how sinus problem and cognitive problems are tied to a herniated disc and that point he cut me off and said he had to go. For a top doctor he was very unprofessional and I can't in good conscious recommend him to anyone. He didn't care about cognitive issues at all either. This is exactly why we don't have good research yet, because guys like this are controlling the field of sexual medicine and they aren't interested in helping just lining their pockets. He is also good friends with the doctor running the Rutgers POIS study that got shut and now it makes sense why that study did not go well. I think I might have to try to take my requests to the NIH and start from there instead.

[Muon]

My alarm bells were already ringing when you wrote ''And he knows about and treats POIS''. He is probably more concerned about his career and doesn't want to be associated with POIS patients. He doesn't know jack shit about POIS, what a clown. Who is this guy anyway?

[Quantum]

Thanks for your objective report, Disaster.   

La Sorbonne team of Dr Amarenco knows a small bit about POIS ( they have published a case review with 3 cases, and some thoughts on POIS), but after contacting them, I saw that they won't make any direct appointments with POIS sufferers, or any call for volunteers for a study or else - they only want individual references by a physician, for evaluation ( their perpective is to evaluate the autonomous system in POIS, and see if vagal nerve stimulation or similar approaches could be efficient or not in POIS, and make a report to the treating doctor... I guess they don't want any legal liabilities, only a "consultant" role, but a consultant that is still in exploration phase about the topic ).

[demografx]

...He claims all of these male sexual problems [ like POIS? ] are due to a herniated disc in the spine.

That would have immediately terminated any chat with me.

[Disaster]

I did some research into his theory, basically he is saying POIS with pain involves what is mentioned in these links:


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4279276/

https://en.m.wikipedia.org/wiki/Cauda_equina_syndrome