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Amino Acid Therapy Week 3 & 4 Results

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Posted 5/7/2013 1:24 AM (GMT 0)
Hey Lemon,

Ugggg... I wish this was easier - but it seems like it has it's big ups and downs. I think what makes it the most frustrating is that a few days/even a week or so feeling worse feels like an eternity. That whole patience thing comes into play. And one really bad day is down right depressing.

I myself have had issue with this current dosage adjustment. I ate a ton of fresh veggie and salad, and fresh juice veggies and such over the last day or so cause I was feeling so well and wham.. loose stool and about 5 times in the can today. In fact I was down right frustrated today... thinking to myself what the heck??? How can things not have clicked yet... I was kind of mad in a way. Then I started thinking of others having similar issues and that made me feel worse. I was blaming it on food or diet - but I think it's just the way the treatment seems to go to an extent.

Then it dawned on me just a few minutes ago, as I took my 4pm pills and things calmed right down again and I started to feel very good - I started thinking wait a minute here. How can I possibly be upset or frustrated. I wake up in the morning with no urgency to run to the bathroom. I can leave the house after I do hit the can. I have no blood in my stool anymore and the constant intestinal discomfort is gone. I wake up without an alarm clock, and go to bed at a reasonable time now, I've put on a bit of weight or muscle really from finally being able to exercise a lot, and I ran into a friend that I have not seen since the last time I was ill (about 6 months ago)... he said wow - you look good, what have you been doing? I was like I have no idea where to start explaining, haha... But that made me feel incredible to have someone notice the difference. I just told him lot's of exercise, which was funny cause he was like really? And you could literally see him thinking hard.. like he was saying to himself "I should start exercising"... was funny. But a big confidence boost.

So I was just sitting here thinking do I really want to go back to all the crazy side effects from meds. My bone density is low from all the Pred, my skin broke out, and the crazy Remicade side effects etc. Thinning hair, and all that good stuff...

I must be about two months now or more with no meds whatsoever. My crohns symptoms have 100% completely gone away... It seems that all I am left with is a bit of inflammation from time to time in my lower colon and the occasional loose stool which for me is the UC side of things. That's pretty darn good compared to any of the meds I've taken. In fact I think I have to say it's the most positive response I've had to date.

I share your impatience and bad day moments though for sure...

I'm still holding out that this is going to work. More so now based on the the fact all my crohns symptoms went away. Which kind of blows my mind.

I have a feeling that for the UC side of things, it's a little more tricky. It's a frustrating disease. There's probably a fine line when it comes to balancing and maybe takes a bit more time and patience.

So hopefully you, Miracles and eventually Sammies again will find a way to tough it through the bad days and when things are down take a good hard look and focus in on any positive changes you can see so far... even if they're just little... A little goes a long way...
Posted 5/7/2013 1:35 AM (GMT 0)
I also want to post thins - its an old draft promo document for the therapy... Certainly doesn't do any justice to what my GI calls the Hocus Pocus therapy, haha. But does give some good info. Specially on side effects to which I've cut and pasted below:

@Sammies - it talks about heartburn specifically. I've experienced this on many occasions as well mostly when i take them super quick with a sip of water or coffee... And have on occasion felt pukey and such for a while after taking them with a quick sip... I assumed it was the lack of food but this offers a different explanation which makes a LOT more sense: (In fact I'm going to try this tomorrow)

ALSO IMPORTANT: Sammies it says you can open the capsules and mix with some water or juice... I wondered this before. I'm thinking if you're taking that many this may be an answer to part of the problem you were having.

-----
HEARTBURN (PYROSIS)
THE PROBLEM: Intense substernal or epigastric burning or nausea after taking the pills.
THE CAUSE: When the veggie caps are simply gulped down with some water the surface does
not liquefy properly causing the pills to stick in the esophagus and dissolve, at which time an
intense substernal and/or epigastric burning is experienced.
MANAGEMENT: Hold the pills in the mouth with water for 10 to 15 seconds before swallowing
so that the capsule surface starts to liquefy and slides down easily.

PREscriptION DRUG SIDE EFFECTS
THE PROBLEM: The recommendation is to leave all drugs in place when starting the amino
acids. Side effects not associated with the amino acids may occur in 3% to 5% of patients while
starting or changing the amino acid dosing.
THE CAUSE: Drugs that work with neurotransmitters not only become more effective as
neurotransmitter levels increase with amino acid administration; the side effects of these drugs
may display as well.
MANAGEMENT: Proper management is to treat the event like a drug side effect. DO NOT stop
the amino acids. Tapering or stopping the drug causing the side effect is proper management.

PARADOXICAL REACTIONS
THE PROBLEM: A specific amino acid dosing value is started or changed and the patient
complains of an exacerbation of symptoms related to one or more monoamine neurotransmitter
related diseases (see page 8). For example, depression may get worse, sleep may get worse, the
patient may get more agitated, anxiety may get worse, migraines may get worse, etc.
THE CAUSE: The exact cause of paradoxical reactions is unknown, but it is known that there is a
dosing range within which they do occur.
MANAGEMENT: When a paradoxical reaction is identified, it is an indication that the amino acid
dosing value needs to be increased, at which point the paradoxical symptoms will resolve in one to
two days. If the dose is lowered in hopes of increasing the dosing values slowly, the patient’s
suffering will be unnecessarily prolonged as the patient is subjected to the dosing value range
where symptoms occur for a prolonged period of time.

HYPERSOMNOLENCE
THE PROBLEM: The patient recently started on amino acids may present at the clinic complaining
of excess sleepiness to the point of having problems staying awake at work or during other daily
activities.
THE CAUSE: In general, these patients were suffering from poor sleep prior to treatment and have
a “sleep debt” that needs to be repaid prior to feeling optimal again.
MANAGEMENT: The first thing to do when complaints of excessive tiredness are encountered is to
take a medical history to determine whether the cause is an imbalance in the amino acids or if the
patient is suffering from a sleep debt that needs to be repaid. In patients with very poor sleep prior
to treatment (3 to 4 hours per night), stop the amino acids and restart them on a Friday if the
patient has the weekend off, telling the patient to sleep all weekend. If sleep was not a problem
prior to treatment, cut the amino acid dosing in half, then obtain a urinary transporter analysis in
order to determine the proper level of amino acids needed.
Posted 5/7/2013 1:36 AM (GMT 0)
Link to the draft document I found

www.healthyselfnow.com/Crohnsprotocol.php
Posted 5/7/2013 1:44 AM (GMT 0)
And I also want to post this: Real science instead of Hocus Pokus...

-------
Concluding Remarks:

The cumulative data for immune cells expressing multiple molecular components that equip them to respond to both serotonin and dopamine are overwhelming. The precise roles of the receptors and transporters for these biogenic monoamines within the immune system are at present, however, less clear. Nonetheless, their eventual disclosure should provide fresh insights and offer new paradigms to the interconnections operating within the neuro–immune axis. Excitingly, this in turn will indicate novel therapeutic targets on immune cells for which pharmacologically well-characterized drugs are already available, a concept recently reviewed by two of us in some detail.

Study Link: www.ncbi.nlm.nih.gov/pmc/articles/PMC1782168/

And this study:

Conclusion:

Observations made in TPH1KO, TPH2KO, SERTKO, and 5-HT4KO mice are consistent with the ideas that 5-HT is both a sword and a shield of the gut. Mucosal 5-HT wields the sword. EC cells secrete 5-HT when the bowel is threatened. This release of 5-HT promotes an inflammatory offensive that protects against invasion but would cause collateral damage if the ENS were not to be protected. Neuronal 5-HT
wields the shield because it is neuroprotective and it can activate 5-HT4 receptors to induce neurogenesis. Thus, the two sources of 5-HT exert effects that are seemingly antagonistic, but in reality they are
synergistic and allow the gut to have its inflammation and survive it too.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3540639/pdf/tacca123000268.pdf
Posted 5/7/2013 1:47 AM (GMT 0)
Hope the above two give you guys a bit more confidence to push through the bad days...

Feel free to email me is you have any questions and such... or are just having a crappy day!
Posted 5/7/2013 1:21 PM (GMT 0)
Hi Lemon

Always call the doctor he may need to move you slower with the supplements and say something to him if he charges you $75 for 5 mins of talking that's not right. He hasn't me yet and I called the next day after I started.

Feel better!
Posted 5/7/2013 4:21 PM (GMT 0)
Well, as mentioned I screwed up the other week and somehow reverted back to the prior dosage for 5 days and then took my urine sample for the lab. We were going to cancel this lab work, but couldn't catch it in time. So they ran the lab work anyway and sent the results to Dr. Stein.

Here is the interesting part. I just posted last night and have been complaining from time to time that the remaining symptoms are hanging around and that one day things are fine and perfectly normal, the next they're not and a bit of mucus shows up, then they're fine again after taking my afternoon dose. Sort of all over the map and up and down during the day. For a few weeks now I have been attributing this to food...

Here is what came back after my second lab test on the same dosage (again my fault this second or repeat lab work even occurred)...

-----
"The lab results came back different than the time before which is an indication of fluctuation which is often not seen unless you have two lab tests with the same exact dose that are different. That is what happened in your case.

When this type of fluctuation occurs it is an indication for the initiation of more tyrosine in the protocol as the tyrosine stabilizes the amino acids in multiple ways and stabilizes the neurotransmitters and multiple ways.

I am recommending that you start tyrosine replete 15 pills per day in divided dose or if you have tyrosine powder you can take one tablespoon a day which equals 15 capsules.

Continue the neural replete at 3 pills in the morning and 3 pills at 4 PM and continue the D5 Macuna at one pill twice a day and the Cysreplete at 2 pills 3 times a day."


---------------

I'm thinking this perhaps explains the fluctuating symptoms far better than what I was blaming on food... I find it a bit funny that now not only my GI is saying food has nothing much to do with it, but I'm running into the same things here! haha... go figure.

Perhaps it all IS just a goofy hormonal type imbalance from a genetic defect of sorts... not necessarily food related.

I just took my 7 Tyrosine Replete's now. Will do so again at 4pm and continue this for 5 days. Will be interesting to see what happens during the next week.
Posted 5/7/2013 4:37 PM (GMT 0)
Keep us posted. I just spoke to Dr. Stein. Am feeling better today. He mentioned the fluctuation thing to me as well. I told him that maybe my symptoms are hormonal....I have that issue now and then (about once a month). He told me that should not cause all my GI symptoms, but it totally does. Staying at this dose until I get the urine sample done. Fingers crossed that I continue to feel better.
Posted 5/7/2013 5:18 PM (GMT 0)
Hi Lemon - You might find this a good read... www.weillcornell.org/pdf/ibs/Frissora_-_Practical_GastroHORMONES.pdf It's about Hormones and GI Disorders in Women.

------
Hormonal Influences on the Gastrointestinal Tract and Irritable Bowel Syndrome

Recent research has uncovered a potential role for abnormal serotonin expression and/or signaling in IBS and other GI disorders (53). The potential effect of sex hormones such as estrogen and progesterone on serotonin remains to be elucidated. However, the importance of serotonin and its receptors, as well as serotonin polymorphisms, in predicting response to treatment is an area of interest.

-------

Also there is much information stating the effects of Estrogen on Serotonin/Dopamine etc. And there are three types of Estrogen in women - estrone, estradiol and estriol. At certain times in female bodies one type is more dominant than than the others (i.e during menstrual cycle, after menopause etc). So things can get screwy when one type is more dominant than the other just like this therapy.

For sure there is something to the Hormonal side and the effects/symptoms you talk of. I came across this all a loooong time ago when looking at some other autoimmune diseases and the effects that air pollution has on them for my line of work (air quality). I had to make a power point presentation on it. Statistically women are as much as 80% more likely to come down with one or more autoimmune conditions and as many as 1 in 4 will in fact most likely after menopause. There's a very strong very link suggested between air pollution and autoimmune disease (Arthritis, Lupus etc) - and hormones perhaps explain why the dominance in women.

Also when you think about Prednisone... Almost Everyone responds to their initial Pred course, but then after tapering or after multiple courses it stops working... Just as they say in this treatment protocol - after time one (dopamine) can starts to further deplete the other (serotonin) and visa-versa. Pred is a full on hormonal drug. It mimics the effects of hormones in your body.

I just find it interesting that it all keeps coming back to this wonky Serotonin level thing.

Do feel better! And think positive!

@Miracles... How are you hanging in there?
Posted 5/7/2013 5:21 PM (GMT 0)
Thank you! I don't know why everyone keeps saying it is not hormonal. I get the worst symptoms and it is all cyclical. Totally sucks being female!
Posted 5/7/2013 8:07 PM (GMT 0)
I hope that we don't have to pop like 30 pills a day in divided doses, that would suck!
Posted 5/7/2013 9:53 PM (GMT 0)
I would get the powder for the morning dose to put in my smoothie. That does sound like a lot of pill though. Mark-feeling better with it?
Posted 5/8/2013 12:48 AM (GMT 0)
Actually I am. Which I really wasn't expecting.

No bm's at all after the 4pm dose and my stomach and instinal area feel ummm very comfortable. But I guess the real test will be tomorrow and so on. I was nervous about all that Tyrosine. 15 kinda scared me! But Sammies seemed ok with it soooo.

I like the idea of making little packets or getting it in powdered form that can just be mixed with juice. I guess the only concern is not getting an exact dose due to particles not mixing, and sticking to the glass etc. But who knows.

I hope Sammies reads about the possibility of mixing the powder with juice. Or even opening the capsules and dumping them into juice worst case scenario.
Posted 5/8/2013 1:55 AM (GMT 0)
Mark-
I missed my 4pm dose. well, I didn't miss it totally, I remembered at about 8pm. I am suppose to take a urine test tomorrow, do you think it will mess it up to have been so late? Not sure what to do about that.
Posted 5/8/2013 2:20 AM (GMT 0)
I think you'll be fine as you caught it within a short time frame and didn't skip it. So I'd make sure to not miss your morning and noon doses tomorrow and take the test.

Send Dr. Stein a quick email just to verify though and if you don't hear back by say 2pm just give them a quick phone call. They'll find out for sure.

Also let us know. Would be good to know for future reference.
Posted 5/8/2013 4:27 PM (GMT 0)
I'm taking the urine test.
Posted 5/9/2013 11:50 AM (GMT 0)
So, after my urine sample, I decided to stop the amino acids until my next dosage change. I have been feeling crappy, so I just thought I would stop and see what happens. Last night (I didn't take my 4:00 pills), I got so angry, and I cried uncontrollably for a good half hour. I never cry (or rarely cry) and never for no reason. Weird.
Woke up this morning to an almost normal poop. Side note: It was 2 weeks yesterday and I took my Humira shot last night. Woke up today with a HUGE purple bruise at the injections site. Never had that before either.
My eyes had been burning pretty bad as well, and after stopping the treatment, my eyes feel better today. But we will see how they are as the day progresses.
I just thought it was weird to have such an emotional reactions???
Posted 5/9/2013 2:33 PM (GMT 0)
Hi Lemon, I wondered what caused you to have a almost normal poo? I would say the crying might be due to not taking that dose, IDK I"m not a doc, but it helps the serotonin in the gut(the feel good guys)OR it could be it was just a nice release the frustration you been feeling, since you've been on this yo-yo like me. A good cry can never hurt OR Could it be maybe Humira is starting to work too?

I'm on a small dosage right now (amino) compared to you, because I said I was having violent pooping after the first night. I wondered if you back down a bit would you feel better?

For two days in a row I had gluten free, sugar free banana bread for breakfast, lunch was chicken and green beans and squash and dinner I had turkey burger and yesteday was a SOOOO much better day. It's mostly all diet for me. NO SUGAR, no bread, no fruit and my gut wins. It's hard to stick with it, I need a chef!

What do you do diet wise?

Also, I'm waiiting on hearing about my dosage change, wonder what that will be?
I hope you feel better and better!!!
Posted 5/9/2013 4:26 PM (GMT 0)
Dr. Stein called this is my new thangggg

Decrease Neuroreplete to one pill in the morning. 

Continue the D5 Macuna 40% one pill twice a day 

Try to increase the Cysreplete from 2 pills a day upwards to 6 pills a day. Take 3 pills one day, a fourth told the next day and if she can tolerate it move up to 6 a day and stay there. If you have any increased symptoms cut back to the highest dose will you have no symptoms stay there for a day or 2 and then moved back up until you reach 6.

 Ok I'll try it...

 

Posted 5/13/2013 12:27 AM (GMT 0)
Wow....

So this has been quite the intense and tough week here since adding the 15 TyrosineReplete. Again that was added as it was suggested that it would stabilize and get rid of the fluctuations - which I was experiencing on the previous dose.

Anyway - this was the closest I have come to date to calling it quits... geeze..

At the beginning of the week things went very well the first day and a bit. Then came the return of the occasional mucus only bowel movement once or twice a day in-between doses. Which I have not seen for some time and is always a sign of an impending flare. Also intense nausea, headaches and a heart burn type thing after meds as well as this horrible feeling in my stomach after taking the CysReplete all of which I had barely experienced prior to this dose and well, wow... now I know how Sammies must have felt! It was seriously rough... I din;t think I was going to make it through this.

On top of that this crazy mild/medium depression, malaise and tiredness set in... like brutal sad for no reason depression and general blah feeling, haha. I hardly talked to anyone all week. Was very strange as I had not experienced this before either - or not to this extent that's for sure.

Anyway, I decided to just stick it out and hang in there as I was told at the beginning of the week that these fluctuations where what was giving me difficulty balancing with this treatment.

The funny or odd thing is that although it's occurring, and darn frustrating with the return mucus only bowel movements usually twice per day - I really don't feel anything like what I normally do when starting to flare. It bothers me for maybe 5 minutes, then I go to the washroom and well, I feel perfectly fine afterwards. In fact I can leave the house, exercise and so on without any issue. So I doubt I'm flaring, I think it's just this crazy treatment... I stuck with it, not missing a dose and am just now starting to adjust to it I guess. The tiredness and malaise went away after a few early nights and long sleeps without the alarm as per usual, and the depression seems to be lifting finally, even more so when I throw in lot's of exercise.

I'm trying to think of what else to report... I added some rice pasta and and home made yogurt with no problem and even went out for dinner last night with my mom - had salad, roasted chicken, mashed potatoes and veggies with no issue or discomfort.

I have to say.. I think they may be right, if feels like I'm just starting the therapy again in a way, where this time it's having some intense response. So maybe there is something to this fluctuation thing... and the whole emotional thing Lemon felt.

My urine test was scheduled for Saturday but I'm holding off till tomorrow due to the weekend. So I'll give it a go tomorrow, send it away and hopefully hear back in a week for a dosage adjustment.

I'm seriously frustrated that it hasn't worked yet - but at the same time I really don't feel ill... or like I have Crohns Colits anymore - or at least not the type I have been familiar with for the last 9 years. Something is still very different in a positive way. Again, it's more ummmm... well it barely bothers me keeps me from doing anything. Strange.
Posted 5/13/2013 12:32 AM (GMT 0)
Also, it seems important to give each dose a full 5 days or more to set in before getting frustrated and thinking about stopping, reducing. Or at least for me it is. It's just hard as heck to tough out. I'm going to keep going on this dose till I hear back... it's only 5 or so more days. I think I can make it no problem. "Suck it up Nancy" I believe is the saying! haha

I am ever so curious as to what the next dose will bring that's for sure.
Posted 5/13/2013 12:59 AM (GMT 0)
Also, to end on the up and up... I should report that I seem to be down to one bowel movement a day in the mornings. Two worse case... So aside from a little mucus only bout roughly twice per day for a few seconds things are somewhat normal. I'm not used to going to the washroom once or twice a day... This has been a welcome change!

That's pretty cool I guess.
Posted 5/13/2013 1:26 PM (GMT 0)
Hey Mark, I'm glad you're doing good. Only going twice a day and normal formed poop is what I USE to have and now I have nothing like it at all!

I've increased my cyreplete now to 6 a day, 3 in am and 3 in the pm and started on that Saturday.

I kind of know what you mean when you go to the bathroom and you come out you don't feel so inflammed, I sort of felt that way too.

I'm not taking the tyrosine like you, when was that added in? After your first urine test? I supposed if I needed that, that would have shown up in my first test?? Would that be correct?
Posted 5/13/2013 1:51 PM (GMT 0)
Hi Miracles, yes, I can imagine it would throw your system for a bit of a loop for a while. Awesome on being able to get up to 6 CysReplete though. That's a good start.

As old mike pointed out earlier, I think it takes quite a few days for your body to adjust to whatever is going on inside when adding 5htp or the CysReplete etc.

The Tyrosine was added last week in an effort to reduce or get rid of the inter-daily fluctuations I was having. It was more accidental as I took two urine tests on the same dose by accident - I was told when this happens and both results are different rather than the same, this means the levels of the supplements are fluctuating. The tryrosine acts like a stabilizer...

I'm sure they'll let you know on your next test if you need it. Ask about it next time you talk to him if your symptoms are all over the map as well throughout the day.

Prior to taking it my symptoms were sometimes normal, sometimes mucus, sometimes semi-d, sometimes multiple trips to the bathroom... all over the map I guess you could say. It took a few days on the dose but over time things have calmed down. Which sort of surprises me.
Posted 5/14/2013 12:44 AM (GMT 0)
Mark,

How many weeks have you been on this treatment and how many urine tests have you had? As soon as I taper off I pred I plan to start this. Is there a point where you say this is as good as the treatment gets and you stop the tests and stick with the current dosage?

If I could just get it stop the urgency and the number of daily bowel movements I would be happy.
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