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Against all odds, this compound is working?

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Th1onein Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 06:46 PM
Original message
Against all odds, this compound is working?
It is too early to say for sure, but then, it will always be too much to hope for, in my books.

The compound that I found to be a systemically effective supplement for cystic fibrosis seems to be working, across the board, in the patients who are currently taking it, though. Most of these patients are taking this under the supervision of their doctors, but they are not enrolled in the formal study. They either live too far away, or some other variable excludes them from the study, but they and their doctors got the compound from a chemical company, and the patients started taking it. That, quite frankly, scared the piss out of me (but there's nothing that I can do about it); all I could do was keep tabs on them, via email, and all I have are anecdotal reports.

But it's working. And it's working systemically. It's doing what it is supposed to do, and doing it quite dramatically.

And I keep going over and over everything, trying to find a weak spot, in the research. I find it very difficult to believe that I have been successful in my quest.
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crim son Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 06:48 PM
Response to Original message
1. Are you serious?
Because if you are, delete the post and lock your doors. That's a pretty major assertion.
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Th1onein Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 07:28 PM
Response to Reply #1
4. You think I don't know it's serious?
That's what frightens me. It's why I check over EVERYTHING, over and over again. But, unless we got one hell of a placebo effect going here; and I don't think we do; I am beginning to guardedly believe it.

I would be more comfortable NOT believing it. It might make me angry, but it would justify my view of the world and how it works.

As for locking my doors, it is a basic tenet of science to welcome criticism. It is why it is so necessary to remain humble in the day to day life of this work. How can you learn anything if you think that you know everything?

The children are getting well, though. That, I cannot dispute. Something is happening. I just pray for no side effects.

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crim son Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 07:32 PM
Response to Reply #4
5. My STBE is a scientist.
I know the difference between theory and practice when it comes to major breakthroughs and astonishing new ideas.
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Th1onein Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 07:35 PM
Response to Reply #5
7. Yes, you are absolutely right.
And that is the source of my being so uncomfortable about this whole thing. It is simply too much to hope for.

Do you think that all of the reading and research can overcome this? Can you get from point A to point J, by just understanding something very well?
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crim son Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 07:39 PM
Response to Reply #7
8. I believe you can.
In any event, document everything. You're probably doing that.
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Th1onein Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 07:45 PM
Response to Reply #8
10. Where has that ever been done, though?
You just don't see that, in the history of medicine.

I am documenting everything, of course. But there's got to be some placebo effect.

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some guy Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 06:57 PM
Response to Original message
2. YAY you!!!!
:bounce: :hug: :bounce: :hug: :bounce: :hug: :bounce:

I'm excited for you. I think the biggest plus is that since the compound is natural, you don't have to have a great deal of concern regarding long-term side effects. I'm not sure about dosage levels and that aspect, but that would seem to be the primary area of concern in that regard.

:bounce: :hug: :bounce: :hug: :bounce: :hug: :bounce:


:hug: :hug: :hug:



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Th1onein Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 07:33 PM
Response to Reply #2
6. Just because the compound is natural doesn't mean that you have no need for concern.
Thank you for your kudos, but really, a lot of people think that if a compound is natural, then there need not be a great concern, in reference to toxicity. Think about that--digitalis is toxic, depending on the dose--and it is a natural compound. In fact, many of our medications today are from natural sources, either synthesized or derived, and they are still toxic.

I do worry about long term side effects. But the dosage in this case is so small, that worry is small. The poison is always in the dose, as they say.

It is almost unknown to go from theory to biological systems, though. That's what worries me. I did my homework, but it worries me. Because it just doesn't happen that way.

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some guy Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 07:42 PM
Response to Reply #6
9. toxicity
that's the word I was missing. I did say dosage levels, and toxicity is what I was thinking of. I do know a litle of something may be safe, where much more of the same thing can be unsafe. I just don't know a concise way to say that. :)

"...it just doesn't happen that way." Well, you haven't been doing things in the traditional way from the very beginning, so in a way it makes sense that your destination would be reached unconventionally as well.

You have a right to be cautiously optimistic though.
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Th1onein Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 07:52 PM
Response to Reply #9
13. You're right.
I didn't go about things in a conventional manner. I studied for much longer than most people do, before they test. Maybe it's just a matter of cause and effect--study a lot, get a lot closer to your goal, when it's time to test.

Who the hell knows? People usually don't do this sort of thing, in their spare time. (Geez, my life is strange.)

I AM cautiously optimistic, though. Very cautiously optimistic.

Thank you.
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elehhhhna Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jun-05-07 04:42 PM
Response to Reply #6
18. SURE IT DOES HAPPEN THAT WAY!
Don't be afraid to make miracles.


You're giving me goosebumps.
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MonkeyFunk Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 06:59 PM
Response to Original message
3. That would be fantastic....
I've been following your threads on this for awhile. I'm very hopeful!
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NMDemDist2 Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 07:48 PM
Response to Original message
11. oh! that's wonderful! think of all the people this could help
that's just wonderful wonderful!!

if the tests continue to go well, how long until you can try it on a bigger sample and then how long till it gets to everyone who needs it (assuming all continues to go well?)

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Th1onein Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 07:58 PM
Response to Reply #11
14. I don't know if we'll even get to market before the buyers do.
The patients and their doctors are getting this compound before the statistical results are in. Before, even, the formal study has commenced. It's worrisome, to say the least, what is happening here.

I've always remembered the adage, "Build a better mousetrap and the world will beat a path to your door." I never thought I'd be right in the middle of it, though.

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conscious evolution Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 07:48 PM
Response to Original message
12. Woefully ignorant here
What is this compound doing for them?
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Th1onein Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-04-07 08:08 PM
Response to Reply #12
15. Cystic fibrosis is a genetic disease.
It is caused by a mutation of a membrane protein responsible for transporting certain compounds out of the cell (CFTR). The CFTR protein gets these compounds through the membrane of the cell, and into the extracellular space. When it is missing in the membrane (for whatever reason, but always because of a mutation of the CFTR protein), it causes cystic fibrosis.

There is another membrane protein, called multi-drug resistance associated protein (MRP), whose function is largely redundant to the CFTR protein. This protein is expressed on a complimentary basis with the CFTR protein, ie., the more CFTR expressed, the less MRP expressed and vice versa. In terms of function, it can take the place of the missing CFTR protein.

I have found a compound that causes the expression of the MRP protein. If this protein is expressed in large enough quantities, it can compensate for the loss of expression of the normal CFTR protein, thus eliminating the effects of the genetic anomaly that causes cystic fibrosis.

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conscious evolution Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jun-05-07 05:49 AM
Response to Reply #15
16. After I posted the above
I googled CF.
That sounds like one nasty disease.
Congratulations on finding this compound.Sounds like a real winner.
On a scary note,CF describes a lot of symptoms that me and my sister present.Is it possible to have very mild cases?
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Th1onein Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jun-05-07 03:28 PM
Response to Reply #16
17. Yes, depending on your mutations, it is possible.
CF is an autosomal recessive disease, so it takes two copies of the gene to have it. You might have one copy that is a variant associated with a milder phenotype. You might have two copies that are associated with a milder phenotype. You can easily get tested.
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