Amino acid-responsive Crohn’s disease: a case study

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Old Mike
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   Posted 1/21/2013 2:26 PM (GMT -7)   
This is insane,looks semi easy,but of course it is complex,trying to figure out how it applies to UC.
I will post on the crohn's forum also.
Old Mike
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108661/

Post Edited (Old Mike) : 1/22/2013 2:40:18 PM (GMT-7)


Faithmac
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   Posted 1/21/2013 8:46 PM (GMT -7)   
Just read the article. Very interesting . I go to a MD that's into a lot of natural and holistic treatments. He said he wanted me to try these amino acid infusions they use in his office. Wonder if it's anything like what's in this article. Very expensive! A series of the infusions were $3,000 . If I knew they would work I wouldn't even blink an eye at the cost. Now I'm curious.
Faith
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
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Vit D 5000 i.u., Biotin,B12
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Clonazepam 0.5mg
Humira started June 2012,now weekly

twiggs
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   Posted 1/22/2013 7:54 AM (GMT -7)   
OM, Great find. I am going to research this big time. This really looks promising.
 
 
 
Steve

Post Edited (twiggs) : 1/22/2013 8:47:20 AM (GMT-7)


Old Mike
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   Posted 1/22/2013 8:27 AM (GMT -7)   
Crohn's may work very differently than UC, this treatment may not do anything for UC,but it sure is worth looking into. Wish I knew why these levels are out of whack in the first place.
Old Mike

twiggs
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   Posted 1/22/2013 8:48 AM (GMT -7)   
I found this on Livestrong.


http://www.livestrong.com/article/185758-how-to-balance-dopamine-and-serotonin-levels/

Looks like a relatively simple process to follow. Keeping this statement from your link in mind..
 
"In Crohn’s disease, it is known that there is an increase of both synthesis and tissue levels of serotonin in specific locations. It is asserted that this is prima facie evidence of a significant imbalance in the serotonin–dopamine system, leading to serotonin toxicity."

I was DX/d with crohns/colitis so perhaps it is something I can try. I think that it is all the same disease personally.
 
Just not sure if I would have to supplement more to increase more dopamine to balance for the excessive serotonin per the quote from the study. OM does that make sense?

Steve

Post Edited (twiggs) : 1/22/2013 9:04:56 AM (GMT-7)


DanthaMan
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Total Posts : 495
   Posted 1/22/2013 12:03 PM (GMT -7)   
Wow this study..so simple. I have read that 80% of serotonin comes from your gut, I wonder if this is why FT works it corrects the bacteria which corrects the serotonin.
ACES+Zinc
Heathers Peppermint Oil
Curamed
Ubiquinol

UC since 2001, 31 year old male. Finding relief with no gluten/diary. Organic fruits/veggies/meat.

Old Mike
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   Posted 1/22/2013 2:28 PM (GMT -7)   
What they are doing in the study is increasing both,which then lets the body regulate to to competative inhibition,also read the other cofactors that they are using. I am still trying to figure out what is really going on,might take me awhile if ever. This may have no impact on UC,don't know. The other question is how did this get out of whack,I was going along merrily on my way when I was 32,then got hit with UC,why. Had job stress at the time,dont believe my son was over stressed when he got hit,but who knows he was in school age 21.
Old Mike

Old Mike
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   Posted 1/22/2013 2:44 PM (GMT -7)   

Bacon Girl
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   Posted 1/22/2013 3:29 PM (GMT -7)   
at one point in 2011, i was taking 5htp randomly because my grandma told me to. i should start looking into this again. i read most of this study and will have to bring it to my next gi appointment. this is good stuff.
Joanna, 23
Currently: 3-6 loose bms a day (7-8 on bad days) urgent and gassy
humira, vit D, coconut kefir, cod liver oil, astaxanthin, magnesium,
b12 shots, spatone iron, vit C, colostrum, interfase enzymes,
scdophilus
Tried: canasa, rowasa, entocort, pred, 6mp, remicade,
lialda, welchol, bentyl, LDN, cipro, flagyl, VSL/Vit E enema,
8 FT, clay, aloe vera, slippery elm
diet: paleo/scd

Old Mike
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   Posted 1/22/2013 3:38 PM (GMT -7)   
Banana it looks like 5htp is not good,unless perhaps taken with the proper amount of tyrosine.
 Mike

C_G_K
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   Posted 1/22/2013 6:55 PM (GMT -7)   
This may be irrelevant to UC, and may explain only a subset of Crohns cases. It may also explain why the patient didn't respond to drugs that modulate the immune system. In fact, It's hard to see how the immune system was involved at all for this person.

Crazy stuff like this that seems to contradict other things we know about IBD makes me think that iBD really has a bunch of different causes that lead to the same symptoms.

Old Mike
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   Posted 1/22/2013 7:02 PM (GMT -7)   
Here is an old thread about zoloft a seritonin reuptake ibhibitor.
There is a connection to microscopic colitis,while this is not UC,who knows what else is really going on in some of us.
 
Old Mike
 
At anyrate this stuff is so complicated I am getting a headache.
 
gut inflammation
http://www.ncbi.nlm.nih.gov/pubmed/21281798

Post Edited (Old Mike) : 1/22/2013 7:10:09 PM (GMT-7)


dorri
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   Posted 1/22/2013 9:31 PM (GMT -7)   
This is so interesting, but like you said, it looks simple but trying to find each individual's balance may not be that simple?

Canada Mark
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   Posted 1/22/2013 9:47 PM (GMT -7)   
I'll post this here as well, since I have no idea which section I should be in - I have Crohn's-Colitis!

New Member here: Mark is my name. Nice to meet all of you.

I joined specifically because of this thread. I came across it through a google search for something related to Prednisone of all things.

My short version: I have Crohns-Colitis, 8 years now I guess give or take. Step One: Antibiotics and Pred, Step Two: Methotrexate and Pred, Step Three: Remicade and Methotrexate. Actually achieved full clinical remission on Remicade and Methotrexate but the trick was I had to follow SCD fanatically at the same time to get rid of all the major symptoms. If I went off SCD loose stools, inflammation etc started to occur again. Pain during bowel movements would eventually return as well.

I had to stop Remicade eventually after 2 years as four weeks after an infusion I would get terrible paralyzing pain.

SCD sorta keeps me up and running but again, only when combined with meds. Med's on their own don't seem to cut it but for sure help the most out of anything. SCD on its own always lands me in a flare again eventually... Strange... But if it the two together work for me, well, I'm not going to question the reasoning.

Currently flared severely over the last few weeks after 8 months med free and just SCD again - just started a course of 40mg/Pred daily tapering after 2 weeks and took my first Imuran pill today so we'll see how that goes over time. Fingers crossed!


Anyway - on to my question:

Old Mike I guess it is. Mike this caught my attention in a very big way, for a lot of different reasons. Mostly it makes quite a bit of sense - and the lure of being normal and able to eat anything again is just too good to resist. I'm sure it's a giant shiny lure for all of us...

I sent an email to the doctor mentioned and received a prompt response. I simply stated I was looking for information to pass over to my GI about the treatment to see if he thought it held merit. "visit my web site and read all of the articles on amino acids and testing etc . they all tie in." was one of the responses... He seems like a decent guy actually.

That all being said some RED Flags go up: I asked if there was anyone I could talk with that had success with this treatment - which didn't get a response. But then again I can see the other side of this as well.

Really other than that, and a lack of anyone else's comments on the internet is what has me reluctant. But that lure is soooooooooo darn shiny right now! I took the next step and asked if he would do a remote treatment using Skype for office visit and FedEx for urine testing etc... No problem he says. He's done this before. He did express concern that Canada Customs will block D5 Macuna because that has L-dopa in it but it was only to one customer and shipping through FedEx seemed to resolve it somehow.

He asked if I'd like to speak with him this week or next.

I'm honestly, and seriously considering taking one for the team here! Haha... The treatment is not that cheap but not that expensive. Manageable I guess would be a good term. I probably waste more on food and supplements that get thrown away or not used than I would on this. My hesitation is that I am starting Imuran today and of course should there be any future success my GI is going to say it's the Imuran, not this that induced remission.

Sooooo... I don’t know what the heck to do here... darn it's tempting though.

If I call the doctor and speak directly with him, does anyone have any questions that they'd like answered? My thought being maybe we could put our heads together and see if this is real - or just an alternative therapy cash grab or sorts.

Any help or advise would be awesome.

All the best to everyone - and have yourselves and awesome evening.

Link to his information website: http://www.neurosciencemyths.com/index.htm

Link to his office website: http://proloshot.com/

Seems like basically the same site. Just different address.

Again, if there's any questions you guys think I should ask him please let me know and I'll get back to you with the responses.

All the best!

Mark
Ontario, Canada

Old Mike
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   Posted 1/23/2013 4:22 AM (GMT -7)   
Welcome Mark: I have read enough to believe that this approach has merit.
Not read his site yet.
Questions: Why does this imbalance happen.
Does this approach apply to Ulcerative Colitis.

My wild guess as to why this imbalance happens is something to do with the way food is combined.



Thanks
Old Mike

twiggs
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Date Joined Mar 2012
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   Posted 1/23/2013 6:46 AM (GMT -7)   
I was able to copy paste the chart used in the protocol. The ratio for L-tyrosine over 5 htp is really big meaning he wanted more dopamine then serotonin production since there was serotonin toxicity. Looking at the chart and reading this was over a 6 week period to reach level 3 dosing assuming 2 weeks for each level. Keep in mind and see below that there were other supplements taken at the same time one being Vitamin B6 which is needed to metabolize these main supplements. I beleive that folic acid is mentioned also being needed for this from another web site. It seems like alot of supplements but I have also read that one can take up to 12,000 mg of the l-tyrosine without it being toxic daily. Therefore even at the highest dose at level 3 he used 5000mgs of it total for a day respectively.
 
 

Table 1

Individual dosing value: milligrams of L-tyrosine/milligrams of 5-hydroxytryptophan*

Level

AM

Noon

4 PM

7 PM

Level 1

1500/150

1500/150

Level 2

1500/150

1500/150

1000/300

Level 3

1500/150

1500/150

1000/300

1000/300

View it in a separate window

Note:

*The patient also received the following daily dosing values: 1000 mg of vitamin C, 220 mg of calcium citrate, 75 mg of vitamin B6, 400 μg of folate, 4500 mg L-cysteine, and 400 μg of selenium.

 

 

Post Edited (twiggs) : 1/23/2013 6:49:52 AM (GMT-7)


Old Mike
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   Posted 1/23/2013 9:41 AM (GMT -7)   
The B6 allows more tryptophan to be converted to Niacin look at the biochem pathways.
So if you are using more tryptophan to make niacin then there is less to make serotonin.
But there is an association in a British diet study of B6 consumption to UC,not sure if it is an artifact
or real,been trying to track that down for some time.
Right now until I get some tyrosine I am taking phenylalanine which converts to tyrosine
Old Mike

twiggs
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   Posted 1/23/2013 9:52 AM (GMT -7)   
OM, I was looking for L-tyrosine at CVS and they do not carry it although they carry 5-htp. I may have to order L-tyrosine online from one of my supplement sites. Also I am ont sure what doseage I would be using. I guess I am still in the research stages as to that question. Perhaps a smaller dose but same ratio of what he used since my symptoms are much less and not as progressss as the case model.

Steve

Old Mike
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   Posted 1/23/2013 10:43 AM (GMT -7)   
I dont quite understand why you need both,I understand the competative inhibition part,but I would think that I am already loaded with tryptophan.
Old Mike

freddyj
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   Posted 1/23/2013 11:00 AM (GMT -7)   
I was looking into supplements that boosted dopamine some time ago, and my recollection is that one of the sides of the supplement I had was bleeding of the large intestine.... Or one of the sides of boosting dopamine, I cant remember. Be careful messing around with these guys.

That said, the fact that these major mood chemicals have some bearing on the gut and its health is not surprising.

Petah
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Date Joined Nov 2012
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   Posted 1/23/2013 4:26 PM (GMT -7)   
I can understand the logistics of this, can someone dumb it down for me :/

Old Mike
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   Posted 1/24/2013 8:48 AM (GMT -7)   
Here is a simplified version of what is going on with the amino acid approach.
They make mention of what can cause the imbalance of neurotransmitters,heavy metals pesticides,have to look into that to see if it has merit.  One item that does make this approach interesting is that most of the serotonin in your body is in the gut.  Years ago IBD was thought to be psychosomatic,I know if I am under lots of tension/stress
UC gets worse.
Old Mike
 
some info
pesticides,interesting when I was a little kid lived next door to a small greenhouse
with outside growing area, they would spray all of the time,I breathed and got the dust on me many times as a kid.  Does not explain how my son got UC.
But then again he is a landscaper,did not start his business prior to UC but he may have been exposed prior,when he worked for lawn companies.
I have not had my lawn sprayed or put down herbisides in 10 years but did in the past.  Can you imagine how many tons are dumped on lawns,
let alone what might be on fruit and veggies.
 
Nicotine
 http://www.jleukbio.org/content/81/3/599.full

Post Edited (Old Mike) : 1/24/2013 10:19:46 AM (GMT-7)


Canada Mark
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   Posted 1/24/2013 10:32 AM (GMT -7)   
I spoke with Dr. Stein this morning:

What does he feel is the cause?

A genetic defect causes a deficiency in Dopamine which leads to a surplus or excess of Serotonin which then causes toxicity.

Is the treatment just for Chrons, Colitis or is it for Ulcerative Colitis as well?

It is for all… Crohns, Colitis, and Ulcerative Colitis, as they are all varying degrees of the same disease. They all have the same trigger so to speak. The Dopamine/Serotonin imbalance.

How does the treatment work/why does it work?

Treatment is geared around balancing the levels of serotonin and dopamine in the body. No one knows why it works at the moment for sure, but that it does work once the right balance is found. It’s like a light switch when it does happen though so expect ups and downs for a period then all of a sudden relief. Sometimes is a fairly fast response – sometimes there no change for us to six weeks or more, then all of a sudden once the right balance is found things click. Depression , Anxiety and any Attention Deficit Disorder type aspects will also disappear one balanced which seems to be common to those with these diseases as well. So expect improved focus, and general well-being.

What about GI’s - why have they not really looked into this/or tried this for patients?

He says he has tried to speak with GI’s over the last few years – but the problem is this – “either you’re going to listen or you’re not.” In his mind GI’s choose not to listen right from the start before he even has a chance and focus on the immune system being the problem and steroids and immune suppressants being the answer. It’s what they have been taught. He said you can only talk so much before you realize you’re wasting your breath – it’s hard to get them to realize there might be another option of dealing with these diseases. So what does one do? He chooses to continue his practice and treat those patients who come to him.

A little bit more about the treatment…

It’s not a cure – the treatment has to be ongoing to keep your Serotonin/Dopamine levels in balance and you cannot miss a dose otherwise it takes about 5 days to rebalance or get back on track during which time symptoms can recur. So it does take commitment – but it’s nothing more than remembering to take your supplements on time and every day without fail. It’s not really that hard.
Also it’s not really that expensive when compared to the full cost of other traditional treatments. Is say $150-200/month in maintenance therapy really that much when compared to the benefits?

What about speaking with other successful patients?

He cannot give patient references/email/phone numbers due to privacy and state laws - but ensures me he has many patients in his database now with success. Over 100 or more. He did state he would like to complete a double blind study at some point in the future comparing patients receiving immunosuppressant’s and steroids versus amino acid balancing therapy and compare the results. He did say that his concern is this – what is he to do? Does he ask some of his patients to stop his therapy and switch back to immune suppressants? How could he do this in good conscience. And what about new patients? Following them etc. He said it’s not the easiest thing to do – just up and decide to do a double blind study. So this has prevented him in the past but he expressed genuine interest in it.

How is his patient in the study/paper he did? The one that we all read… The non-responsive Crohns person.

He said he has known this young man since he was a boy – around 8 years old. A friend of the family. He said he is doing remarkably well and moved back to Israel. Which, in the past was not remotely possible as how does one expect to travel, and make a new life elsewhere, let alone function when you’re chained to a toilet 10-20 times a day and depleted both mentally and physically.

My overall impression:

I honestly felt he was genuine – He expressed a lot of concern when I mentioned I had started Immuran. He felt this was a horrible drug and the possible side effects well – I don’t need to say anything here that has not been said before. His preference would be for me to not take Immuran – or delay taking it and try his treatment first. After all I have lasted 8 years now through up’s and down – is another say 6-12 weeks really that difficult to suffer through? He said patients do have trouble sometimes with the humps – I.e not responding right away, so they can get frustrated and feel like they’re not making progress, then all of a sudden things click.

Personally, I cannot function right now, I have trouble just leaving my house – and without medication I know I’m headed for serious trouble that will (And actually has) impacted the ability to run my business. I’m at the point where I have to replace myself – find/hire a new boss to make sure that if I’m not there for one reason or another, things still get done. It’s a fact that I’ve had to confront head on over the last few months of this flare.

My best result ever was with Remicade/SCD together for full biopsied clinical remission – If I could go to the Remmy clinic tomorrow I honestly would. As soon as I stopped Remicade things came back – slowly, but none the less they came back.

He did say he was willing to treat me while taking the prednisone and Immuran – with the goal being to taper off. But expressed great concern over the meds once again.

I’m not sure what do to here – to be blunt and honest. Part of me is saying what the hell? What have I got to lose? – what is there to loose in simply trying. And part of me is saying hey – there’ a lot of people that take advantage of us given our condition – i.e naturopaths, supplements and so on.
So perhaps I’ll dwell on it for a day or two.

Maybe there is someone on the board here that is currently not on med’s – that would be interested in trying this – as again, any positive results would be easily to attribute to Immuran versus this.

More thinking I guess…

Mark

kazbern
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   Posted 1/24/2013 11:51 AM (GMT -7)   
That is a really interesting article, Old Mike. Thanks for posting the link.

Mark - if I had the struggle you do with treatment resistant disease, I would not hesitate for one minute in pursuing the amino acid treatment plan described in this paper. From what I can tell there is no downside risk. You can continue your treatment as you currently are and just add these supplements. In the published case study the patient continued using his mesalamine and LDN while taking the supplements.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/12.

freddyj
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Date Joined Aug 2011
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   Posted 1/24/2013 11:58 AM (GMT -7)   
Who and where is Dr Stein and how do I get ahold of him?

Ok I see he is the author.. Is he that easy to just call up? Im interested in this.

Post Edited (freddyj) : 1/24/2013 12:02:36 PM (GMT-7)

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