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#20351 - 07/08/05 01:56 PM Re: Board rules reminder
Danusia Offline
Member

Registered: 08/14/00
Posts: 63
Loc: canada
I'm so glad that this topic has been addressed. I was also getting fed up with all the "ads" and the penta water poster made me so mad that I had to restrain myself from posting because the language I would have had to use would not have been fitting for this board and might have reduced me to his level of understanding and communication. I have always thought of this board as an oasis of support for those of us who may not have other kindred spirits in our lives. Thank you for clarifying that this is indeed so!

[This message has been edited by Danusia (edited July 08, 2005).]

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#20352 - 07/19/05 02:05 PM Re: Board rules reminder
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Hearsay/Jennifer: I hate to admit, but I don't check our ichthyosis.com email very often (and don't have the ability to do so other than from home--and I'm not home very often!). Anyway, would you be so kind as to resend your email to me at ljpindc@yahoo.com? That email is also associated with my bulletin board profile now (for easier reference).
Many thanks,
Laura

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#20353 - 07/20/05 08:45 AM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
Hello friends,

I read with interest views expressed by members on issues of rules and about alternative therapy.

My postings on Auto Urine Therapy were not exactly welcomed .
I want to put a question to the Administrator directly as to how one can just brush off a therapy which is thousands of years old and the world has just awakened to it?
I am talking of Amroli or AUTO URINE THERAPY as written by Lord Shiva in DAMAR TANTRA.

I would wait with interest to know from you friends.
_________________________
Use what you have
You'll get what you don't have.

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#20354 - 07/20/05 10:06 AM Re: Board rules reminder
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
You didn't break any rules, which is a pleasant change.

However, you haven't managed to tell us *why* your therapy is so great. Nobody is brushing it off, just looking for answers about how it works.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#20355 - 07/20/05 10:51 AM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
Hello Hearsay,

When so much of literature with people's stories in their own words is available on www,
where is the need to prove it for the nth time to satisfy you ?
You seem to be bent upon not even read what you do not like.

You alsmost sound as if you want only modern allopathic medicines usage should be practised by people over here.
No..Hearsay. This is absolutely one track approach.

Time and again I am stressing. Proof of the pudding is in eating it.
Either you try it out and talk or CEASE TO TALK against it.
I have used this therapy and know how wonderful it is.
_________________________
Use what you have
You'll get what you don't have.

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#20356 - 07/28/05 08:18 PM Re: Board rules reminder
sekud Offline
Junior Member

Registered: 07/28/05
Posts: 2
Loc: Woodbury, Ga, USA
I am new here and I was just reading all the different posts. I am just floored at this. I have used urine on my face, when I was a desperate teenager trying to get rid of acne. How gross I was. It did nothing but smell bad to and for me. I work at a dialysis center now. I know what the kidneys filter and send out and there is no way ever that I would even think about rubbing it back on my body, much less drinking it. That is rediculous. I don't have ich, but my husband does. And for someone to come in claiming this is going to solve it all, should not even bother. People that don't have this condition has no clue about the problems and the pain that ich causes. And I agree with the other post that hearsay I believe had in another if this treats AIDS then what is Africa waiting on. I think if you have something like that you believe in then fine, but until you know the deal with what the people with ich go thru and don't think this will work then don't get mad, that is what they choose. And anyway I don't see where pee and but moister in anyones skin. Thats a new one for me. I personally don't want my husband rubbing urine all over him. That is a way to get out of the body what needs out, not rub it on the skin to be absorbed right back in. Hope to not step on any toes to bad, but until you know and understand this condition I wouldn't just come in and tell people to drink or rub urine on them and it will just heal them up.

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#20357 - 07/28/05 11:53 PM Re: Board rules reminder
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Thank you, sekud, for posting this.
I am so absolutely angered at these recent posts by these people coming in here on this bb thinking they are going to speak into something that is really not their area, and taking it personally that we all aren't jumping in there and eating up what they have to say?? Give me a break. It is offensive to me, I read this bb every day, and gather info for my boys, and only speaking when I feel I can be an encouragement, and feeling safe when I can post probs and know that everyone who thinks they can help will reply to me, and they all are dealing with this problem in their own lives. I wish there was some way some of these new postings could be blocked (specifically nichiro and edward), or something, because they don't belong here, as far as I'm concerned, they are not dealing with ichthyosis personally or in their families, and I find them incredibly offensive, trying to push and sell some product or idea out of pride......okay, give them the benefit of the doubt, even if the motives are "pure", then if that's the case, if someone says basically "no thanks, don't think it will help this condition", then I don't think that these people would be so offended, if their motives were "pure". This is a forum for those who deal with this condition in their lives, not a forum for people to tout their "miracle" ideas and wares. It is different when someone posts something new or exciting they've found in their journey toward dealing and living with ichthyosis. That, is obviously legitimate, and that, I would imagine, was the purpose in creating this "alternative therapies" section of the bb.
Okay, vented, sorry all, I just don't think some of these recent posts have a place here.
Thanks to all of you others for being such a support to me and my family, though. I don't imagine that many of you know how helpful you ALL have been, and I know you will be. Extremely grateful for this bb. Thanks and blessings upon you all...
Laura Crozier
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#20358 - 07/29/05 01:44 AM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
Sekud and Laura Ann,

How typical ?

I do not blame you for taking this stance .
It is ingrained in the heads by those white coated , sthetescope wielding knowall doctors who have not even known as yet HOW AN ASPIRIN WORKS.
No one is forcing you to read what I post. If you don't like it., so be it. But why you want to prevail over others thinking.?

This is a section about ALTERNATIVE THERAPY.
AUT is an alternative form of medicine which has hospitals in India and other countries.
And mind you , these hospitals have no Post Mortem facility\ies because nobody ever died due to ill effects of AUT.
These hospitals do not fleece you for blood,urine, histo, patho and all those tests.
They also don't charge you for medicines.

Compare this to the following scenario.

If your docs give you medicines, why you are still suffering ?
Why take banned drugs to get relief ?
Why expensive tests?
Your medical science is hardly less than 100 years old and it claims to know all answers ? It is pure BS.This system of medicine is thousands of years old. And till today, no even a single person has died due to side effects. Can your system give answers for the deaths that it caused ?

Gimme a break willya ?

And please do not think I do not know what it is like suffering from a condition which is tragic. I have lived with cancer in my family for many years and I know how it feels.
Thank God that I stopped tobacco in time and cured myself of something that would have killed me by now (same way four members of the family died due to cancer induced by tobacco)

I can go on and on and you too can go on and on.
Please do not try to influence people . People are intelligent and if they want, they will try AUT.

May peace be upon you.

Nichiro

[This message has been edited by Nichiro (edited July 29, 2005).]
_________________________
Use what you have
You'll get what you don't have.

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#20359 - 07/29/05 07:06 AM Re: Board rules reminder
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
Nichiro - Even though there have been no deaths by AUT it's disgusting. Why do you think we wash our hands after using the bathroom?...because we don't want urine, any amount, on us. To each their own. If this works for you, wonderful. Keep it up. However, I will stick to my methods and keep what my body wants to rid itself of out of me.
The problem with certain people who want to 'help' the Ich. community, is that you come on here and almost force your opinion on everyone. Say what you want and if someone is interested, they will contact you. But the fact that you and Edward argue back and forth might possibly take someone who may be interested in whatever you are saying and turn them the other way. Nobody likes a pushy person.
Most of us on here are very open-minded. Some of the methods used in our daily lives can be viewed as extreme, but they work. So you don't need to go overboard in trying to pull us to your side. If someone is interested, they'll respond to your posts or contact you privately.

[This message has been edited by Lisa Marie (edited July 29, 2005).]

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#20360 - 07/29/05 08:55 AM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
Lisa Marie ,

You wrote,

The problem with certain people who want to 'help' the Ich. community, is that you come on here and almost force your opinion on everyone.

Show me an instance where I pushed any body that they must follow what I say ?
And who says that whatever your body removes from it is a waste product ?

If I were to tell you that Heart attack would surely be fatal if injection of UROKINASE in emergencies is not given to patients ?
Urokinase is a product synthesised from Urine (Human urine). Only now they have started to prepare clinically in labs.
Our fathers and may be grandfathers who have lived to tell a tale after a Heart attack must thank Human Urine for production of Urokinase.

Humans eat and drink far more offensive products made out of /that come out of Animal bodies including their by products.

Just because your organ to produce urine is situated near another organ, it does not make it offensive in nature.

I do not want to over sale but facts remain facts.
Approach anything new with an open mind.
That would be my request.
Nichiro
_________________________
Use what you have
You'll get what you don't have.

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