[mellivora]

Amongst other things, we have started a new thread on the SMF forum documenting the geographic distribution of POIS sufferers. I know we have started similar things before but this new thread is as simple as I can think to make it and I hope it'll get more responses than other attempts in the past. Please log on and add your data if you don't mind. It's here:

http://poiscenter.com/forums/index.php?topic=299.0

[demografx]

Thanks, mellivora!

[demografx]

Below is my actual correspondence with a forum member yesterday. His name has been disguised to protect his confidentiality - demo

Since I was a member of Willem's site does it mean I'll be banned if I don't delete my profile there? I didn't realize his site would be a threat to our forums.

No, Anonymous_POISer. Never! Anyone and Everyone should be free to explore anything that might make them feel better.

We just don't want him using OUR free platforms - deceptively - for a profit venture. Several months back, Willem invited me to lunch, pressing me hard to recruit our forum members to his website. I clearly said, "NO!", at lunch, and on subsequent occasions, daveman and I repeated, "No, this goes against the pricinples of a Free Forum." But he was not to be deterred in hunting profits, and continued deceitfully, in spite of assuring us otherwise.

Outright lies and bad faith dealings, I'm sad to report, marred our entire relationship. We're obviously sorry we didn't catch this sooner.

I want OUR MOTIVES dictated by OUR MEMBERS. And not some pharmaceutical company willing to pay "someone like Willem" top $$$$ for info about us (that THEY deem important) so they can sell us "POIS Toothpaste®" LOL...actually that's disgusting, not funny!

YOUR DATA ARE NOT FOR SALE AT NSF AND SMF!

ANONYMOUS_POISer, you are tops in our book!!!

Best,

demo

okay that's a relief, thanks demo : )

You're very welcome, My Friend.

[neilep]

Thank you for your support, neilep.

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[demografx]

Thank you for your support, neilep.

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Still can't thank ewe enough, Buddy Neil!!!!

[martin88]

Growth Hormone:      4.16, (0.01-0.97) Very High

I had 0.8 for GH out of POIS. Hope you'll find out why it is so high.

[Limejuice]

Just wanted to post progress on exploring desensitization as a treatment. Visited the allergist and she was open to injecting treatments if they were prepared by a trusted doctor. Then contacted Dr Waldinger to see if preparing treatments and shipping them to the US was an option. Awaiting his response.

[Quasar]

Not a problem, demografx. Thank you for the response. My bloodwork was as follows:
Name, Result, Reference.

Follicle Stimlating Hormone:  1.6mIU/mL, (1.3 - 19.3) Lower End

Jon, i remember my FSH hormone was also in the lower end!

[demografx]

Just wanted to post progress on exploring desensitization as a treatment. Visited the allergist and she was open to injecting treatments if they were prepared by a trusted doctor. Then contacted Dr Waldinger to see if preparing treatments and shipping them to the US was an option. Awaiting his response.

LJ, many thanks for the desens update!

[demografx]

Not a problem, demografx. Thank you for the response. My bloodwork was as follows:
Name, Result, Reference.

Follicle Stimlating Hormone:  1.6mIU/mL, (1.3 - 19.3) Lower End

Jon, i remember my FSH hormone was also in the lower end!

My FSH was in the reference range, normal.

[Starsky]

Just wanted to post progress on exploring desensitization as a treatment. Visited the allergist and she was open to injecting treatments if they were prepared by a trusted doctor. Then contacted Dr Waldinger to see if preparing treatments and shipping them to the US was an option. Awaiting his response.

Limejuice, i think you did not read Waldingers papers. I can tell you ITS NOT A OPTION. Desens treatment is not based on standarized vaccines like for normal allergies. Waldinger dilutes FRESH semen and injects it. If you want really have it done by Walldinger the only option is to move to Holand. I personally would advise you that your allergist gets in touch with Walldinger just too learn how to make the dilutions properly. My allergist said that SCIT is too risky and we chose SLIT, if it will not work we will try provocation-neutralization treatment with injections. 

[Limejuice]

Thanks Starsky

[jferr]

Not a problem, demografx. Thank you for the response. My bloodwork was as follows:
Name, Result, Reference.

Follicle Stimlating Hormone:  1.6mIU/mL, (1.3 - 19.3) Lower End

Jon, i remember my FSH hormone was also in the lower end!

Interesting, Quasar. Were you able to get the levels back to normal? And, If so, What did you to fix it?

[demografx]

thanks demo (and daveman), for protecting us from commercial exploitation - much appreciated.

Our pleasure!

[B_Daniel]

Over the last few pages in the forum, here are the enzymes/ supplements/ vitamins/ treatments that have been suggested:

high grade omega 3s
salmon and seafood
sweet potato
wobenzym
bromelain
papain
multi-enzyme@ nuzyme
spinach
chocolate
B3, B3, B6, B1, B12
vitamin D
olive leaf extract
saw palmetto
garlic
krill oil
vitamin C
zinc
magnesium
zma
tripterygium wilfordil
zymnese
chlorella lecithin
folic acid
spirulina
quercetin

It's difficult for me to separate pie-in-the-sky treatments from the real ones, based on forum posts.  I keep hearing about a page that aggregates all of our treatments but I've never seen it.  And even if there were a list, I'm not sure that's enough.  We desperately need a way to vote on all this stuff.  Kinda like how Amazon reviews products.  Because I'm spending a freakin' fortune on all these supplements that aren't helping me, when that money could/should be going to the NORD fund!

[demografx]

B_Daniel, is the Polling Center at the other forum a way to begin?

[B_Daniel]

Yes I believe that could work!  Unfortunately you couldn't see who rated what so you couldn't reach out to individuals with questions, but it'd be a great start! 

The poll would need to either left open so that other members could add their own treatments to be rated, OR the poll would need to be carefully managed so all suggestions are added.  Plus, the Poll would need to be kept at the top of all the Polls, if possible, so it'd be easy to find.  We need our main pages to be easier to find/ get to than the rest.

I'll attempt to start the poll soon...

[B_Daniel]

Yes I believe that could work!  Unfortunately you couldn't see who rated what so you couldn't reach out to individuals with questions, but it'd be a great start! 

The poll would need to either left open so that other members could add their own treatments to be rated, OR the poll would need to be carefully managed so all suggestions are added.  Plus, the Poll would need to be kept at the top of all the Polls, if possible, so it'd be easy to find.  We need our main pages to be easier to find/ get to than the rest.

I'll attempt to start the poll soon...

I tried to make the poll but it won't work - the polling center doesn't have the functionality we need.  To start, a Poller can only click on 1 treatment.  They need to be able to rate all that they've tried, so maybe 30+ in some instances. That's the main problem. 

Second, we need to know how much it helps each person, not just Yes or No.

Yeah, so good suggestion Demo, I thought it might work but it won't   

[daveman]

Yes I believe that could work!  Unfortunately you couldn't see who rated what so you couldn't reach out to individuals with questions, but it'd be a great start! 

The poll would need to either left open so that other members could add their own treatments to be rated, OR the poll would need to be carefully managed so all suggestions are added.  Plus, the Poll would need to be kept at the top of all the Polls, if possible, so it'd be easy to find.  We need our main pages to be easier to find/ get to than the rest.

I'll attempt to start the poll soon...

I tried to make the poll but it won't work - the polling center doesn't have the functionality we need.  To start, a Poller can only click on 1 treatment.  They need to be able to rate all that they've tried, so maybe 30+ in some instances. That's the main problem. 

Second, we need to know how much it helps each person, not just Yes or No.

Yeah, so good suggestion Demo, I thought it might work but it won't   

I am in the process of devising the best method possible to unite various types of information like this into a relational database.

Any surveys and lists that we've had up until now have all been pretty basically manual and with common text entries. So I'm working on organizing a way to have all this information transcripted through a database manager.

Once it's in, then we can start looking for categories and cross referencing  various pieces of data against others.

Also for a quicker fix, while I was browsing around today I found a software add-on to do surveys. I'll be checking it out along with a few more that are kicking around "free".

One of these will accumulate new data, and who knows, might even serve as a portal through which we can transfer the 5 yrs of information we already have.

Sorry for the delay, but I'm working my butt off!

[B_Daniel]

It's good to know you're working on it!  Thanks.