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Amino acid therapy update-continued thread

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Posted 8/30/2013 4:11 PM (GMT 0)
Well - I do know that the reason for the treatment is to try and address the issue of excess 5HT found in people with IBD. The Tyrosine is used to increase L-dopa and eventually Dopamine... this then lowers Seratonin.

In any case I still maintain that they may have accidentally found a way to help regulate the immune response, but are more or less still trying to figure out how/why it may work. And it appears that either it doesn't work for everyone or that no one is willing to stick it out long enough back and forth through the dosage changes due to the financial costs. Both are more than understandable.

Soooooo...

I guess this still leaves us up in the air...

For me I am now 8 months with no meds - even though I had a slight flare a few weeks ago, that is under control again so far. So either it's pure coincidence or this is doing something, but even my normal family doctor commented on how surprised he was that I am not on any medications...

So I still don't know what to make of all of this.
Posted 8/30/2013 4:13 PM (GMT 0)
Also I have been using this Tyrosine powder for a little over a week now and it seems to be just fine:

www.truenutrition.com/p-980-l-tyrosine-powder-100-grams.aspx?

Saves a fortune!... And it's very fine so mixes super easy with just water.

Post Edited (Canada Mark) : 8/30/2013 10:19:30 AM (GMT-6)

Posted 8/30/2013 4:19 PM (GMT 0)
Oh - and we can't forget that this treatment totally falls in the realm of "natural" or "alternative" ... so the possibility of scam is high... and coincidence...

But again, at the moment, at least for me I can't argue with the results.
Posted 8/30/2013 4:28 PM (GMT 0)
Mark: I think I did enough leg work on this before anyone started the supplements to believe
it was not a scam,or at least some of the science behind it was not a scam.
Anyhow the urine test might be a problem since the metabolites can vary depending
on the food you happen to be eating,I posted a study on that way back. Then again you take so much
pure material in the supplements that in might overwhelm any changes due to diet. Don't know for sure.
Old Mike
Posted 8/30/2013 4:35 PM (GMT 0)
Sorry for all the posts! but I forgot to add:

The biggest or most noticeable changes for me over the last 8 months is:

Increased Food Tolerance: I can now have corn, milk, potato, rice in small quantities, the odd cookie type thing, the odd piece of white bread or dinner roll but not very often, like once a week or every two weeks... but any whole wheat or highly processed food kills me.

NOTE: I try to eat everything organic now which may be part of the difference.

Less urgency: I can leave for the day and not worry the majority of the time

Less Pain: No real pain anymore with bowel movements, even if they are loose stool

Zero Activity from my fisutula: In fact I forgot all about it over the last 8 months. Even with loose stool or D which is when it normally acts up.

Less Blood/Mucus: Blood and mucus still appear form time to time, but nothing like it was before.

So again... I have a hard time calling the treatment a scam, but a hard to saying it works! haha... frustrating.
Posted 8/30/2013 4:45 PM (GMT 0)
OM - Not that it matters, but I actually sourced out their suppliers and materials they use to do the urine tests as well as the software they use to analyse the results. It's all super simple actually and the dopamine and seratonin urine (assays I think they call it) are cheap and easy to purchase. Comes with the preservative and all. Just pee, transfer and wait a bit...

I just haven't had the time to order them - but my intention is to do this at some point with a professor of Neurobiology at the U of W because he has to interpret the results. He's intrigued by some of the science behind it as well.

I've just been extra busy with some work and have not been able to put time into this. I will be able to in a few weeks though. Ultimately we just want to do a few urine tests and analysis and see what (if any) results show up.
Posted 8/31/2013 6:29 PM (GMT 0)
Mark: You might find this of interest.

What I am saying about the urine test is the test is fine and accurate,but

the concentration of the metabolites can change depending on what you have eaten prior to pulling the sample. This may through off the results a little.

This link has nothing to do with the urine testing.

OM

http://www.sciencedaily.com/releases/2013/08/130831110933.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily+%28ScienceDaily%3A+Latest+Science+News%29&utm_content=Google+Feedfetcher

Posted 8/31/2013 7:25 PM (GMT 0)
I was curious at one point of something like this as well - but couldn't quite follow the reasoning they gave in their papers for this not happening - actually I'm not even sure if they gave a reason. In any case, I've noticed a lot of people trying the the therapy - myself included keep adding or trying other things as well. Perhaps the better approach is to change nothing for a while and iterate through the tests, but it's so hard to not change anything cause that's exactly what we all want to do - if that makes any sense.

In any case, back when I questioned this , I read through the papers and sourced out the software they use for analysis along with the actual assay kit or whatever its called that they use to check urinary seratonin levels and dopamine levels. The kit even comes with the preservative and all - and it's quite inexpensive - only a couple of bucks each. You pee - transfer and wait then it gives you the results. They say right in there paper where to get it and which they use. And the software comes with a free 30 day trial.

My thought was to take this up to the University and maybe take a few tests and see - well I'm not sure what. In any case there's a Professor of Neurobiology there - I sent him everything I had on it and he said he was very intrigued. We keep setting up lunch meetings but either him or I always have to cancel. I think I'll make it a priority in a week or two though.

At the very least I really want to hear his take or thoughts on the whole thing. I forget exactly what his area of research interest was, but it was perfect for this.

Again though, what the heck would I even do with it - other than perhaps find out if results vary or well - again - not sure...

That's quite an interesting paper...
Posted 8/31/2013 11:12 PM (GMT 0)
Hey Canada
how did you go about getting off remicade? i was recently diagnosed but doing much much better eventually i would like to be on minimal to no meds... thanks
Posted 9/1/2013 1:52 AM (GMT 0)
I didn't get off it by choice. I responded quite well to it when combined with SCD and even achieved full on clinical/endoscopic remission with the two together. But after two years I built up antibodies and started having crazy side effects so I had to stop... otherwise I would have stayed on it as long as I could probably.

For me diet never worked on it's own and meds never worked on their own - for some reason I always need both...

Has your doctor suggested Remicade? It's worth a try... anything is really... I hate the idea of meds myself as well, but I like the idea of feeling better and getting my life back more than I hate the meds, so I take/try them for that purpose... searching for something that might work. Same as many others on here I think.
Posted 9/1/2013 1:53 AM (GMT 0)
Oh and currently I've been able to stay off meds for 8 months now - but that's using this Amino Acid therapy... Or at least I think I can say at this point that is what's keeping me from flaring...
Posted 9/1/2013 2:55 AM (GMT 0)
"Has your doctor suggested Remicade? It's worth a try... anything is really"

yes, im on remicade and its working great! i have had 2 treatments so far just trying to get the diet down now as well but im getting close
Posted 9/1/2013 4:32 PM (GMT 0)
Excellent - well hopefully you'll find some relief from it - the way I look at it is it buys you time... so if it's only one year then so be it, but if it's 10 years then you never know what else might come along during that time period.

The risks really are minimal when you take an unbiased look at them.
Posted 9/3/2013 5:29 PM (GMT 0)
Old Mike-I talked to Mark about this, but my second to last urine sample they told me that I was all worked out and my levels were exactly where they were suppose to be. they recommended I do another urine sample in a month to make sure. I did and they wanted to up all my doses. I refused, as I felt fine and did not want to make any changes. I figured it had to do with my hormones or something, but it could definitely be food related.
Mark-Is the tyrosine powder working for you? I just had to place another order and bought some through Stein......ugh. Let me know if it is working, I would like to switch. Also, I have been looking to buy the supplements elsewhere, but can not get them anywhere without going through all the hassle of phone consults and additional fees. Everytime I call Stein's office to order, they want me to do a phone consult. I don't want to pay 70 bucks to have a 2 minute conversation to tell him I feel fine. Are there any other options out there??

BTW-It has been since April on these AA supplements. Although I also take Humira once every 2 weeks, I will say that this treatment is helping. First clinical remission in 20 years. C-scope in July was absent any inflammation. So, Mark and I are the only ones showing any positive results????
Posted 9/3/2013 7:54 PM (GMT 0)
Since I add the Tyrosine Replete my symptoms have disappeared during the day. Once I go a couple of times in the morning I don't feel like I have UC during the day at all and a few weeks ago I thought I dying. So something is helping. Not sure if it will continue but I noticed the change the very first day I added the Tyrosine Replete.
Posted 9/3/2013 8:52 PM (GMT 0)
I am still trying to find that urine metabolite test that says that diet effects the test results.

But this might be good enough,banana loading. Perhaps bananas are not good for UC as Bananagirl may have

found out. So basically if you eat certain items the 5-HIAA will increase independent of any supplement you

are taking. So I would suspect that this can through off your dosage change if you happen to eat the wrong food.

Old Mike

http://www.ncbi.nlm.nih.gov/pubmed/1373788

this might have been it not sure

http://www.ncbi.nlm.nih.gov/pubmed/8929065

Post Edited (Old Mike) : 9/3/2013 2:56:21 PM (GMT-6)

Posted 9/4/2013 1:42 AM (GMT 0)
I think brt4545 said it best... "my symptoms have disappeared during the day" Generally speaking this is how I am some days awesome, some day's not so awesome.

- and it fluctuates with dosage changes. I seem to be teetering on the edge of a flare right now though without actually going into one. And for me, again 8 months now with no meds whatsoever is pretty insane. The tyrosine I think being the addition that helped as well - but can't say for sure.

On this particular dose the mornings I am in the can a lot (i mean a lot!) but with formed stool - I think this is more to do with the addition of phsyllium seed and resistant starch. - but just after the 4pm dose it's like it's gone.. till the next morning. Whereas on my last dose it was like it was gone through the majority of the day.

Mucus is still my biggest issue that no mater what I can seem to get it to subside...

I'm going to keep at this for another few dosage changes just to see....
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