Adrenocortical Hormone Abnormalities in Men with CP/CPPS

[Rufus]

How do I get in touch with Dr. New?

[webslave]

http://www.marianew.com/

[Rufus]

TY WS.
I figure if my particular problem is mediated by the HPA Axis, she'll be able to tell me as I'm in NYC.
Again many thanks.

[kpbos]

Trying to not get my hopes up over here, but I have to agree with Gary that reading this post did give me a glimmer of hope. It gave me some feeling that CPPS is not something I did to myself, I'm really hoping that's the case. This was a nice post to find after not visiting this website in a long time. Also, if these findings are accurate, would it explain why the Stanford/Wise-Anderson Protocol does not work for everyone? It seems to me that no matter how often I practice relaxation, I only get to a certain level of improvement, which rapidly disappears when I'm back in the real world, even at times of little stress.

[Rufus]

Well, I just read this entire thread and my oh my does it raise many many possibilities...

But to keep it short I just want to say thank you to Dr. D for all of his hard work and dedication for thinking outside the box and exploring alternate avenues to a patient population that most but not all (except for the handful like Pontari, Nickel and the gang) have pretty much washed their hands of us.

Thanks Dr. D for fighting the good fight and trying to bring sense and clarity to a condition that deserves a thousand fold more attention than it currently gets.

Thank you so much.

Rufus

[J Dimitrakov]

More (basic) questions:
If this was a game of hormones/enzyme, how does trigger point help? I can see relaxation playing a role though.

Remember, CPPS is likely caused by a variety of factors coming together. It's not JUST muscular or JUST neurological or JUST endocrine or JUST immune, etc.; it's probably caused by all those systems interacting in a network. Fix one part of the network and you'll see an improvement in symptoms.

I think this is a great comment

[J Dimitrakov]

Well, I just read this entire thread and my oh my does it raise many many possibilities...

But to keep it short I just want to say thank you to Dr. D for all of his hard work and dedication for thinking outside the box and exploring alternate avenues to a patient population that most but not all (except for the handful like Pontari, Nickel and the gang) have pretty much washed their hands of us.

Thanks Dr. D for fighting the good fight and trying to bring sense and clarity to a condition that deserves a thousand fold more attention than it currently gets.

Thank you so much.

Rufus

Thank you, Rufus! I am just trying to do my job.

It does get frustrating from time to time - for example, a senior researcher told me recently that if I continue doing CPPS research this will be a "career-breaker" for me.

There are, however, the occasional "vow moments," like the moment we know what we have found in the present study. It's really sad that it took two years to publish them but we used an approach which is really out of the box and which a lot of people, even in the medical profession, have trouble understanding. HPA changes are usually very subtle (unless you have a tumor or a very severe defect) and diagnosing HPA changes really requires intimate knowledege of the philosophy of disease as well as the (putative yet unknown) underlying molecular pathways. All I can say is ... stay tuned.

Best,
JD

[J Dimitrakov]

I have a question for Dr. Dimitrakov:

Can a deficiency in cortisol pathways also be related to the (generally intermittent) ED issues which plague many CPPS patients?

Hi, jj77,

I apologize for the late reply. As you can imagine, there are a lot of other things I need to take care of on a daily basis.

Yes, it is definitely a possibility. Since most of the enzymes in the adrenal cortisol synthesis pathways are also ubiquitous and located in the mitochondria of different cells, my educated guess is that such a problem would result in ED. You might ask how and all I have to say is that we are looking at that possibility right now. I can't really say much before we have finished the experiments but here's an idea. As you might know, nitric oxide (NO) is the major mediator required for erection. Cortisol is involved directly in regulating the levels of NO, therefore, any changes in cortisol would result in changes in NO and erection.

Hope this is helpful. Please let me know if you have further questions.

Best,
JD

[webslave]

As you might know, nitric oxide (NO) is the major mediator required for erection. Cortisol is involved directly in regulating the levels of NO, therefore, any changes in cortisol would result in changes in NO and erection.

That is really interesting and would explain why the poor erection symptom often coincides with the worst phase of the disorder, when tension and stress are often at their maxima, leading to cortisol suppression (in addition to any low cortisol caused by the enzyme deficiency). So it becomes the final straw that results in low libido and poor/absent erections. Very neat.

[ramana]

It does get frustrating from time to time - for example, a senior researcher told me recently that if I continue doing CPPS research this will be a "career-breaker" for me.

I wonder why - this appears to be an area so far untouched and therefore a lot of scope for innovation/research. Just FYI - my PCP thinks you are cool Once the paper appears in PubMed I think people can give more (positive) feedback
Thanks Dr

[J Dimitrakov]

It does get frustrating from time to time - for example, a senior researcher told me recently that if I continue doing CPPS research this will be a "career-breaker" for me.

I wonder why - this appears to be an area so far untouched and therefore a lot of scope for innovation/research. Just FYI - my PCP thinks you are cool Once the paper appears in PubMed I think people can give more (positive) feedback
Thanks Dr

Thanks again, Ramana.

Best,
JD

[Rufus]

Dear Dr. D,

No disrespect to your colleague and please take this comment light-heartedly but tell him to try to imagine what its like getting kicked in the balls and having the pain remain...

Tell him that this could happen to his friend, his relative or even to himself and that there is no reason at all why this condition should not get all the necessary attention it deserves.

Tell him that there have, in all likelihood, been countless men who never found this website and had no avenue of hope to hold onto and who knows where they are but it's the research that you do and the support of this forum that keeps many of us going. It keeps us holding onto the day when this condition is eradicated.

Please don't get dismayed by him or others. There's a lot of us counting on you but I know you'll be successful as my wife says hard work always pays.

[jj77]

Hope this is helpful. Please let me know if you have further questions.

Best,
JD

Dr. D,
Thanks for the great explanation!

[inflamed]

Just discovered this post, looks promising

Hats off to Doc D, cheers doc, I for 1 would give anything just to know what causes the condition, maybe it is a case of just clenching muscles, but for example I would get spasms all over my body at random times arms legs etc. I am also quite regularly getting spasms above the eyes, so this leads me to think there is something else wrong ie a deficiency perhaps, which is basically all it sounds like with out the medical mumbo jumbo?

I would quite easily drop everything i've got, if you need an assistant doc (lol, I make a mean cup of tea). Anything for hope..........instead of

The Stanford/Wise-Anderson Protocol has taken me so far and I dont regret it for 1 second. If this was the final piece happy days (its hard not to get your hopes up).
I will be making an appointment with my doc to see if it is possible to get put on the waiting list to get tested for this .... at least then if it does get proved I don't have to wait another 3 years....grrr

Again doc, cheers for your research and your interaction on this forum along with everyone else, your are 1 in a billion literally.

[carld]

Dr. D

I get my yearly physical in May....What test should I specifically ask for to test my AH levels?

Would a regular doctor be able to test for this?

Does taking a nasal corticosteroid like Nasacort effect any testing for this?


Regards...