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Amino Acid Therapy Week 3 & 4 Results

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Ulcerative Colitis
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Posted 4/22/2013 4:55 PM (GMT 0)
@Sammies

I'm not sure. I hate to preach lol, but in thinking about it now, i see a trend with myself - when I cut the processed foods and get some exercise I feel pretty good. Maybe try that for a day or two - eat real food and go for a few walks or try riding an exercise bike. Ya never know... It does lift the spirits though.

You have the same thing as I do - Crohn's Colitis/w Fistulizing Crohns - So basically we have all the same symptoms as UC but with a few extra thrown in just cause we're so lucky ;)... I can't help but wonder if Lemmon is having a different reaction due to having UC... Or, well, I guess what we've learned from the site is that everyone reacts differently be it diet, meds, and so on...

In any case - I still say try just eating real food, without sugars and not processed and throw in some exercise. See if that gives you some relief.
Posted 4/22/2013 5:33 PM (GMT 0)
I only have 45cm of my colon affected. A mild case to some, but the inflammation is moderate to severe in that area. I always wondered how 45cm could cause me so many issues. I was wondering the same thing. Since my case is a lot different than the 2 of yours, I was actually hoping it would be easier to adjust dosing. I don't think that will be the case, as I have never been lucky in that area. But I was hoping!!
Posted 4/22/2013 10:41 PM (GMT 0)
I'm seriously contemplating the ER. The heartburn, nausea, malaise, and depression are weighing on me. The symtoms match dehydration butni dont think im dehydrated. Anything I can even get in my mouth is making me even more ill and I've slept for 2.5 days. This is sooooo unlike me. I'll go to work doubled over, in massive pain, and running to the bathroom. I'll drive to work with vertigo. I don't usually give in. But I just did two loads of laundry and wound up winded and in tears. Had a teaspoon of natural peanut butter and can't stop burping it up. Was supposed to see a musical tonight and can't get out of bed. The heartburn is just coming at me like crazy. What gives???
Posted 4/22/2013 11:00 PM (GMT 0)
Sammies: I had to stop after 3 days the 5htp was making my colon too acitve I was crapping at midnight.
Of course I was not following the complete protocol,only tyrosine and 5htp.
If it is that bad just stop.
Old Mike
Posted 4/22/2013 11:29 PM (GMT 0)
Sammies - I think the same as OM - If it's that bad stop. Or talk with the Doc and see what he has to say.

Quick question though - If I recall the change in dosage brought this on by adding the D5. How long till your next change? It should be any day now I think.

Post Edited (Canada Mark) : 4/22/2013 5:37:12 PM (GMT-6)

Posted 4/23/2013 3:41 AM (GMT 0)
Yes any day now. Just had the 10pm 2cys+1D5. All I could do to keep from throwing up and then stomach cramping. Subsided in about 15 mins. If I stop will I have to start all over again at day 1 or will I be able to pick up with new dosing? If I stop will my crohn's symptoms come right back?

Sorry to be such a whining ninny. Sorry to dominate the conversation. Thanks for the support!!!
Posted 4/23/2013 2:17 PM (GMT 0)
Sammies-
Feeling any better today? I have been thinking about you. Please call whoever you are working with. They have to have a better option for you than feeling this horrible. Thoughts are with you today.
Posted 4/23/2013 2:40 PM (GMT 0)
Hey guys those on this amino acide therapy, I talk to Dr. Stein today at 4pm is there any questions you think would be beneficial for me to ask? I'm scared from what sammies going through, I don't want to go through!

Does Dr. Stein really know what UC is and is aware they last thing we want is going to the bathroom more?

Thanks

Posted 4/23/2013 2:47 PM (GMT 0)
Maybe ask if he has any idea why one patient would respond seemingly so much more favorably than another (eg. Mark vs. Sammies)?

I dunno how specific I'd want to get though, I wouldn't really want him to know all his patients are comparing notes as a group. Not really sure exactly why I feel that way, just do haha.

Just my opinion of course.
Posted 4/23/2013 2:59 PM (GMT 0)
@sammies


Not that there's much information out there on this - but you seem to be on a very strange dosage and as well taking them at odd times compared to any of the case studies on crohns and or anything else for that matter.

From what I gather, Dr. Stein is not the person directing you what and when to take them, so I'm just curious of this whole part.

From what I have learned from Dr. Stein is that starting doses are generally:

2 NeuroReplete 2x daily (8am give or take and 4pm)
2 CysReplete 3x daily (either 8am, noon, and 4pm - or noon, 4pm and 7pm)

and adding L-dopa to the starting dose:
1 L-dopa 3x daily (8am, noon and 4pm)

and from here I subtracted the noon L-dopa as per Dr. Stein to get that big change.

So I'm just wondering why you would be taking Cys+D5 at 10pm? Would you mind typing out when you take your supplements. Just totally curious more than anything.
Posted 4/23/2013 3:04 PM (GMT 0)
@Miracles

I'd just be straight up and address your concerns with him. Tell him some people are having a very tough time on some of the doses. Maybe just talk with him about this - and be very upfront about UC and how it effects you.

I've come to realize that even GI's don't have much of a clue as to the real effects of this disease on us. They understand the symptoms to a degree as does everyone - but unless you have this disease you truly don't understand it...
Posted 4/23/2013 3:17 PM (GMT 0)
Also Miracles - I'd ask him about the tiredness and "malaise" type response and how to deal with it which seems to be what everyone is saying... just sooooooo tired. So this way you're aware of this part which seems to have been understated...

I can tell you that this part has worn off to a high degree with me. Slightly still there - but not anywhere near as bad as it was. So that took about 4-6 weeks to wear off - which is a long time.

I did read something a while ago that said in regards to the GI upset from the treatment "the people that experience the most GI upset, are unfortunately the people that need it the most"... I assume the same could be applied to the "tiredness and malaise" perhaps

In any case, the fact that it having an effect at all (good or bad) at least suggests that it's doing something... which is more than anything else I've tried in the past from Naturopaths, Supplemets etc etc... So this still gives me a bit of hope in regards to this.
Posted 4/23/2013 3:32 PM (GMT 0)
Mark---Actually, my current dosing is not too much different from yours.

NeuroReplete 4 capsules 8am 4pm
CysReplete 2 capsules noon 4pm 10pm
D5mucuna 1 capsule noon 10pm

Today is day 35.
Posted 4/23/2013 4:45 PM (GMT 0)
Hey Sammies - ok, so it's mainly just the shift from 7pm to 10pm then. I think I'd like the 10pm time frame actually as it spreads it more over a 24 hour period perhaps.. who knows lol.

I know that if I don't eat before taking them I get some pretty intense heartburn as well - but it's short lasting till I eat or even just drink some water - or half water/half juice.

Well - I really do hope you can hang in there till the next dosage change which will hopefully bring you relief. I still wonder on some levels about this whole treatment - but at the same time I can't argue with the change and the ability to tolerate other foods and such. And the fact that I'm not on any meds...

I'd feel 1,000,000% more comfortable doing this formally through a GI though... but till that day I guess this is all we have.

Post Edited (Canada Mark) : 4/23/2013 10:51:53 AM (GMT-6)

Posted 4/23/2013 4:50 PM (GMT 0)
I also get the distinct impression that ummm how can I say this...

It was very, very much "accidental" or stumbled upon that this may help alleviate some, many, or perhaps even all of the symptoms at some point of UC and Crohns... and therefore there's a bit of lab rat time we're volunteering for in some senses...
Posted 4/23/2013 8:46 PM (GMT 0)
Hi. Well Mark he knew who you were and is so happy you are doing well. This guy shoots right from the hip, I like his demeaner.

My supplements will be here Thursday, he's starting me out on a lesser dose on Neuroreplete 3x 2times a day and sorry if I spell these wrong. Then I will be taking the CysReplete 2 pills three times a day. He says some of these may irrate the gut call him if they do and I said THATS THE LAST THING I NEED!

I get three urine tests and some other supplements in case I need them after the urine tests come back.

I said what I have read and heard is tiredness is the number one complaint and he said they are probably not sleeping at night. I don't know what he meant other than, not enough hours of zzz's but well see.

I will keep you posted and yes Mark it was about $800 to get started! It's a life long thing, but then again so would asacol and I haven't had a formed poop in 8 years, so it's worth a shot IMO.

 

Posted 4/23/2013 9:05 PM (GMT 0)
Hmmm - I'm excited that your going to give it a try! This is awesome... But at the same time I'm kinda totally nervous... haha... Really I just want to see people have a good response and be able to get back to life again. UC/Crohns takes so much from us. It kills me to hear of people having trouble on this at the moment.

I find either you'll like him or you won't... there's not much in between.

I just don't want to see anyone suffer through the tough parts of this therapy - and I would love to see someone reach long term med free remission. And I don't want to see anyone whatsoever spend money on this without results... That's probably my number one... well actually to see someone get better is my number one.. but still.

As to the sleep thing - I almost believe him in a way. Most I have talked with have chronic sleep troubles or insomnia or just don't sleep well... years of this adds up - "sleep debt" is the term he uses. Still though - if you don't but into the term sleep debt, well, I can say it does improve with time and honestly, consistent good nights sleep. If I stay up past say 11:30 pm I'm a mess the next day as I awake between 7&8am without an alarm - so just naturally. Because of this, I try and go to bed at 10pm or somewhere in that range.

Anyway - I'm glad your trying it and I do hope it works for you... 8 years is to much suffering without relief...

Also monthly maintenance should be around $170 give or take a few so it's not really that bad long term.
Posted 4/23/2013 10:10 PM (GMT 0)
ok Miracles-
We are in this one together too! Tomorrow will be day 6 for me. I think I will do my first urine tomorrow. I can tell you that I was started on cysreplete at 2 pills 3x a day, and the neuroreplete at 2 pills 2x a day. I don't feel any different yet. I was tired the first 3 days, but seem to be ok now. Hope you do well on the protocol. Mark had been terrific about answering any questions I have. We are here for you!!
Posted 4/23/2013 11:48 PM (GMT 0)
Since I was the original poster on this I studied it well,my guess.
Tiredness probably too much 5Htp/serotonin.
For me over active bowel,too much 5Htp/Serotonin.
Whether you become aclimated to this dose,remains to be seen.
Old Mike

Post Edited (Old Mike) : 4/23/2013 6:04:33 PM (GMT-6)

Posted 4/24/2013 3:35 AM (GMT 0)
Dealing with an almost continuous flare for the past 2 years and right now, it is bad. I am holding a bottle of prednisone which I swore I would never use again. I've been on and off it for a decade and finally weaned all the way off (despite bad flare).

Mark, I've been following your progress with much interest. Thanks for posting.

I was on what I thought was Dr. Stein's website but it was confusing and I wasn't sure whether I was contacting Dr. Stein. I got back an email offering to refer me not to Stein, but instead to a chiropractor in CA since that was closer to where I live, in Hawaii. (yes, colitis in paradise). Is everyone here working directly with Stein? I wonder whether the protocols are pretty set?

Any thoughts are appreciated. Good luck with this!
Posted 4/24/2013 3:43 AM (GMT 0)
Hi Dane,

If you want just click on my name and you'll find my email address in my profile - just send me a quick email and I can forward you his (Dr. Steins) contact information. I forget the rules on here for posting contact info and stuff so that's why i suggest doing that... otherwise I'd just post it on here. It will be tomorrow though by the time I get to responding to you as I'm just heading to bed now.

PS - You have no idea how jealous I am of where you live! ugggg... I gotta move somewhere warm like that. I'm not built for Canada, plus I look awesome with a tan ;) haha
Posted 4/24/2013 1:12 PM (GMT 0)
Spoke to my naturopath last night. Lab results not in and they have to go to Dr. Hintz first as she is working w him and Kalish. Says Hintz is pushing the dopamine which is most likely causing the immense fatigue. Also, as Lemonhead suggests, I am extremely sleep deprived. With an ileostomy and constant UTIs, I don't sleep much at all. She's asking me to hold on another day or two until she and Hintz can determine next dosage. I did skip my 4pm and 10pm yesterday. Went to bed at 8:30pm. up a few times but just had to get to bed. Will try to stay on track today--will depend on malaise. The problem for me is that with my kidney and fragile electrolyte history, once I start losing wt it's difficult to eat and maintain.

Curious question she and I have: how might the protocol differ for IBD folks who have had resections and major intestinal removal? I had a total proctocolectomy --no colon, rectum, anus-in 2009. Another reason for low electrolytes and weight loss.

She's also curious if the nasty effects I'm feeling are more from the CysReplete than D5. Will ask Hintz about this.

Will see my GI today. Will let you know what he thinks about this hocus pocus (that's a joke).
Posted 4/24/2013 2:10 PM (GMT 0)
Hi lemon,

He told me for me 3 of the neuroplete, why the difference do you know or would you think?

Posted 4/24/2013 3:55 PM (GMT 0)
Sammies-If I recall like 90% of serotonin is made in the digestive system. This could be a major player in why you are having such a hard time right now. To be missing your colon, I would think you are making far less serotonin than those of us who have their colons. Maybe Old Mike can weigh in on this one.

Miracles-No idea why the difference. I think I asked mark what his dosage was and his was the same as mine. I got my pills the next day, so maybe yours will come today and he puts a sheet in there with your doses. Let me know what that says. Could be based on your symptoms? Not sure. I can tell you that Mark had WAY worse symptoms than I did. not sure.
Posted 4/24/2013 7:05 PM (GMT 0)
I did amino acid peptid shots ($300 a shot) had about 4 of them a few years back and it worked for the first shot for a day or two, felt better only for those two days and it went south, still UC so I don't know if that correlates to this protocol. Just thought I would throw that in there
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