[Guthrie]

Vitamin D results were extremely low

That makes five cases now of low vitamin D!

[demografx]

Vitamin D results were extremely low

That makes five cases now of low vitamin D!

Guthrie, very interesting!

[lauracostis]

Vitamin D results were extremely low

That makes five cases now of low vitamin D!

i have started prescription vitamin D, drisdol 50,000 IU once a week.  i  dont know if this will help me feel any better, i used to take large amounts of over the counter vitamin d with no noticeable changes.

[demografx]

**********************************************************************************************************************************************************************

From:     Marcel Waldinger

Date:     July 20, 2010 3:32:57 PM PDT

To:       demografx

[Waldinger's reply to my brief inquiry below - demo]

Dear Mr. [demografx],

Thank you for all your kind information, which I appreciate. Reconsidering my initiative to contact you, I  would prefer, if you don’t mind, to restart our e-mail contact after 3 to 6 months. I would prefer to give the next body of information as soon as I am confident to discuss it with you. Note, you will be the first POIS patient to whom I will correspond.

With best regards,

Prof. dr. M.D. Waldinger



2010/7/20 demografx wrote:
***********************************************************************************
 
Dr Waldinger, was my intial reply satisfactory? [demo]
 
***********************************************************************************
 

[demografx]

Frustrating to admit, this repeats the same pattern of previous years' correspondence and/or telephone contact.

- demo -

[demografx]

Many thanks, B_Jim, you're absolutely right. This is a very positive track that we are on, regardless of the waiting period!

[demografx]

In terms of reasearchers do we want to wait for dr waldingers article or do we want keep looking. When sending out letters do we want to mention dr waldingers progress.

I don't think we can afford to wait. But I wouldn't mention Dr Waldinger's progress.

[Vandemolen3]

I think the key will be that POIS must be treated in a way like Fibromyalgia. POIS shows a lot of similarity's with Fibromyalgia. Only POIS is after an O.

Demo, I think that Dr. Waldinger doesn't want to come out with his findings after he is 100 percent sure. He is a professor. And he can't afford that his findings are not correct. A publication is a scientific journal is a prove that he made progression. So we all have to be patient. The most of us suffer a lot of with years with POIS. So that waiting a few months should't be so hard. In the meanwhile we have to search for (natural) things that reduces the pain and symptoms.

[daveman]

Demo, I think that Dr. Waldinger doesn't want to come out with his findings after he is 100 percent sure. He is a professor. And he can't afford that his findings are not correct. A publication is a scientific journal is a prove that he made progression. So we all have to be patient. The most of us suffer a lot of with years with POIS. So that waiting a few months should't be so hard. In the meanwhile we have to search for (natural) things that reduces the pain and symptoms.

I agree. And besides, we are quite "visible" within the community, so even more incentive to move carefully. Patience, I say, we've waited this long. Meantime, forge along as we always have.

We are beacons to the truth and reality of this disease if nothing else. And even if we don't find a cure, we provide hope, comrad-ship (SP?) and sometimes even humour.

So hang in there, we are enough by ourselves.

[Counterpoints]

I think the key will be that POIS must be treated in a way like Fibromyalgia. POIS shows a lot of similarity's with Fibromyalgia. Only POIS is after an O.

Demo, I think that Dr. Waldinger doesn't want to come out with his findings after he is 100 percent sure. He is a professor. And he can't afford that his findings are not correct. A publication is a scientific journal is a prove that he made progression. So we all have to be patient. The most of us suffer a lot of with years with POIS. So that waiting a few months should't be so hard. In the meanwhile we have to search for (natural) things that reduces the pain and symptoms.

It depends on the context.  You can report your findings, whatever they may be, while trying to be unbiased.  Then there isn't much to lose, even if there is some incorrect speculation.

I agree we have to try to be patient.  And I do think we should continue our own investigations just as much as before.

[horizon]

I think the key will be that POIS must be treated in a way like Fibromyalgia. POIS shows a lot of similarity's with Fibromyalgia.

I agree but how do you currently treat Fibromyalgia?
Is there some kind of neurosurgery available?

[horizon]

My OUT-OF-POIS test results. (Feeling well, 10 days after an N.E)

Serum Testosterone              27.6 nmol/L (8.0 - 30.0)
Serum Sex Hormone Binding Glob  52 nmol/L (13-71)
Serum TSH level                 1.2 miu/L (0.20-6.00)
Serum free T4 level            17.5 pmol/L (10.0-25.0)
Prostate Specific Antigen      1.00 ug/L (<3.00)
Serum FSH level                4.3 iu/L (1.0-9.0)
Serum prolactin level          149 mu/L (<550)

Just come back from the doctors.
He said my results were fine.
He said my SHBG was well in range for that testing lab.

He is going to book me to see a Urologist for the "slightly blocked" sperm ducts.
He said though it wouldnt explain the days of fatigue though.
He had no answers for that.

I'll grill the urologist to try and find some answers, and establish exactly the problem with what is "slightly blocked", and what can be done, and will ask about possible nerve damage or available neurosurgery etc.

[Animus]

In terms of reasearchers do we want to wait for dr waldingers article or do we want keep looking. When sending out letters do we want to mention dr waldingers progress.

I don't think we can afford to wait. But I wouldn't mention Dr Waldinger's progress.

I had the same question- thanks...

[Animus]

I think the key will be that POIS must be treated in a way like Fibromyalgia. POIS shows a lot of similarity's with Fibromyalgia.

[/quote]

I think that's a very interesting observation. Upon reading the Wiki entry for Fybro.

[Vandemolen3]

I agree but how do you currently treat Fibromyalgia?
Is there some kind of neurosurgery available?

The problem is that there is no good treatment for Fibromyalgia or Chronic fatigue syndrome. Only some diet advices.

[Vandemolen3]

He is going to book me to see a Urologist for the "slightly blocked" sperm ducts.

Maybe it's an urethra stricture. Do you had a lot of ary tract infections?
Maybe I've got this problem too. This year I had three UTI's. The last time my urine was checked and everything was OK. But I still had pains, especially on the back of the penis where the urethra is.

[horizon]

Do you had a lot of ary tract infections?

Not that I know of.

[demografx]

In terms of reasearchers do we want to wait for dr waldingers article or do we want keep looking. When sending out letters do we want to mention dr waldingers progress.

I don't think we can afford to wait. But I wouldn't mention Dr Waldinger's progress.

I had the same question- thanks...

Just to elaborate, we don't really know anything more specific about POIS progress at this time.

But as I mentioned in my first reply, if we know another interested researcher, we could always offer to put them together. It would be their decision to collaborate or not. I hope this clarifies.

[lauracostis]

In terms of reasearchers do we want to wait for dr waldingers article or do we want keep looking. When sending out letters do we want to mention dr waldingers progress.

I don't think we can afford to wait. But I wouldn't mention Dr Waldinger's progress.

I had the same question- thanks...

Just to elaborate, we don't really know anything more specific about POIS progress at this time.

But as I mentioned in my first reply, if we know another interested researcher, we could always offer to put them together. It would be their decision to collaborate or not. I hope this clarifies.

demo, you are totally correct, we should not mention Dr. Waldinger at all, nor should we put another researcher in touch with him, i think he probably has his own research under control. also, researchers may feel it is a waste of time if we tell them that another doctor has solved the problem already, which we dont know is true yet anyways.  i dont think Dr. Waldinger has any plans to collaborate with others until his papers are peer reviewed and published. we should give him 4 months or so, if we have not heard from him before that time demo should attempt to resume contact with him to check in.

[lauracostis]

i will not consider the fight against pois over until i am actually cured, or am being thoroughly and effectively treated for for pois symptoms. i will continue to pursue my own theory of removing GnRH from my system with the T/P male birth control.  maybe i will beat Dr. doctor waldinger to the finish line