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

Old Mike- Thanks for posting this! I find this case study fascinating and hope this will become a new avenue for research and trials.

I usually go over to the UC forum to search out your posts. Thanks again for taking the time to find and post all your discoveries!

Dont know but the paper says they treated more than one crohn's person,since this guy was a complete med resistant mess they did the paper on him.
I have no idea if it works,but amino acids are so cheap there is no money in the treatment,except for the testing.
Old Mike

Cheers for that; I managed to read most of it... <_<.

Will bookmark this, as a 'novel' treatment worth consideration. In my case, I have given up on immunesuppressants being the answer for my Crohn's and will tell my consultant this next time I see him. I would give this a go.

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.

Mark
Ontario, Canada

Canada Mark,

I for one can appreciate that not only are you willing to try this new treatment, but that you're taking the time to inform others of experience and potential results.

You seem to have the same concerns I would over some of the "red flags" you've indicated.

Other that the ones you mention, it seems strange that this Dr. is an Orthopedic Surgeon and not a GI.

Considering the skepticism, I can't blame you at all for wanting to try this approach, espcially when you consider that the expense is comparitively minimal, and also natural.

I hope there's some potential here, I look forward to hearing about your experience.

OT: Just wondering, I notice that you're from Ontario. Can I ask where? I too am in Southern Ontario, and I'd be interested in your opinions and experiences with the GI's and clinics you've been with.

Tom.

I did a really brief look at this a bit ago...sounded like an easy try to help without moving to the big meds.  I don't remember much from my research except it was advised not to combine the amino-acid care with corticosteroids.  I also remember that side effects included fatigue and loss of coordination (I'm a tired clutz already).  I think I am going to bring this up with my docs and my circle of CD friends and see what has been tried - some of my circle venture more into new meds than I do so they have found out more.

You would think we could get one of the drs who are advocates of alternative medicine like Dr Oz, DrMercola, Dr Hoffman. etc, to look into this

Here is the link to my UC thread on this subject,I have other info linked in that thread.

I add links as I find interesting info. This info seems to be legit,but I am having difficulity trying

to figure out what has gone wrong with the bodies balance of neurotransmitters/tyrosine/tryptophan ratios,

food of course has the correct ratios of tyrosine to trypt,but it seems that carbs to protein in meals and perhaps they way they are combined also plays a role.

Any interesting info or thoughts you might have please join in with the UC thread,

and if you have any doc's or biochemists on this forum,their help would be great.

I would hope that somehow, someway, the  connected internet brain will find an answer to our problem.

Wish I was a biochemist.

https://www.healingwell.com/community/default.aspx?f=38&m=2621363

Old Mike

 

Post Edited (Old Mike) : 1/23/2013 12:27:16 PM (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

I'd try it myself, if my consultant was agreeable to it (doesn't look like something you can do on your own without a doctor's help), and if I wasn't on Pred and unable to come off it without a serious relapse.

I would agree: don't take Imuran at the same time if at all possible. Your GI will only credit any resulting success to the Imuran and, indeed, he could be right.

Speaking for myself, I've got rather a strong motive to find alternative treatments to the current Crohn's meds. Even if I have to have surgery in the meantime, the Crohn's will come back and I will still need a way of keeping it under control.

Good luck, dude. If ever I manage to see my consultant (pursuing him is like wading through frozen treacle...), I will give feedback on his opinion.

ninetofive said...
Wht if you already had part of colon and ileum removed, does it matter, would the therpy still work?

I want to know this!

Well - I have been thinking about this all day and night now. And that really needs to end! My thoughts lead me to this. I hate the idea of me (or anyone else for that matter) falling prey to a scam out of sheer desperation, or someone who sees dollar signs based on the misery of others. So big red flags are still up even after talking with him.

At the same time - I cannot help but think of all of the personal experiences that relate to mind over matter so to speak - and the idea of a possible imbalance does pop up over and over and over in every different hypothesis - be it an immune disorder or imbalance, a bacterial imbalance or even a mental issue. I've heard it all at one point or another. Anyway – I’m not here to justify this treatment or comment on why it may or may not work or the science behind it – Just that it really, really intrigues me as an alternative. Worth a try I guess. What the heck is there to loose except for a few bucks. Besides if it works then that’s awesome – if it doesn’t and it’s a scam then I’m sure one day I’ll find myself in Florida for a vacation and I’ll make a point of an impromptu office visit to ummmm… straighten things out ;) haha. Man to man so to speak!

Like a lot of people out there (I assume) I'm sooooooooooooooooooooooooooo tired of reading about diet this, medication that, probitoic this, study of this shows that and one thing contradicts another... It's just too much. Overwhelming to be honest. Makes it hard for any of us to make a clear, rational decision.

So here is what I am thinking:

I’d like to try this – but I’m not the best person due to the fact I’m starting Immuran. And well, if remission does occur again then it could be one or the other.

At the same time – Over the last few years I have been thinking about doing something a little odd. I’m by no means a wealthy person, but I have had the financial benefit of being able to explore “Alternatives” to a degree. As I have said in a previous post – I view alternatives, diet and exercise as a way for me to empower myself and help myself feel like I am actively contributing to a better life and success with this disease – rather than just take meds and complain “why me”… It gives me a sense of hope. A little bright light to reach for when things are rough.

In business – I have had some recent success. Giving back – or giving this same “Hope” is something I’d love to do. Soooo.. If there is someone else that’s wanting to try this – but just doesn’t have the financial means to consider it or take a chance. Preferably someone that has had UC or Crohns for a very long time and is non-respondent to meds, I’d like to volunteer to cover the costs of this treatment. Or at least cover say the 5 months of supplements and testing required. That way it’s done right, as per the protocol, above board, and will either help others on here with a possible success treatment – or help others on here by preventing them from needlessly paying for a very expensive sham treatment. Either way it’s a win/win. I don’t see the benefit of trying this without following exactly what he is proposing. Or self-trying it just by ordering the supplements. As it would just lead to an unclear and unconfirmed result. Which would then cause others to try and maybe not succeed, and waste their valuable money.

Further – I’d like to expand this. In talking with the nurse at the hospital today, about children and the effect Prednisone can have on your bone density – she said it’s a shame she has to see this. Exercise and supplements according to her are the first line of defense against this. One of the problems we talked about was that parents just aren’t able to help all the time because of all the other medical expenses they incur. In my mind – A light bulb went off. I said to myself, wouldn’t it be just awesome if there was some sort of fund that could help give hope. Help people empower themselves, and most importantly inspire others to try…

I know, personally, how disabling this disease can be at times. And how hard it can be just too even get to work. Then collect the paycheck at the end of the week and well – you have to choose – Do I buy meds or food? With no room for anything else. Forget about supplements or organic food or the monthly gym membership that you can’t even get to at times because you’re so sick. And you lose hope.

My thought is I’d like to create a fund that helps people out with little things that they otherwise could not try. If what they “try” works or not is not the point. It’s just that it gave them a chance to actively participate in their well-being. It could be a simple matter of covering the cost of VLS 3 for a 3 month period – just to see if it could make a difference. Or a gym membership to get exercise just to see if it could make a difference. Or well, anything reasonable for that matter. Just something to inspire someone to “get back in the ring” and continue their fight... To help make a difference. To Inspire Hope

I don’t want to hijack this thread – so over the weekend I’ll start another one and maybe some of the long term board member could chime in with their thoughts on how/if I should get this up and running.
I could personally put a few dollars into it. Just to start and as my business succeeds over time, a percentage of each sale would go back into helping others. Again I have to think how to structure it. It’s a little off the cuff right now.

Anyway that’s my two cents again for tonight…