Amino Acid Therapy Week 3 & 4 Results

I didn't take last nights dose and this morning was a hour and half late, oh well. My urine test should be into the lab today. Now i'm out of the tests at home so the next one will cost $160+ it's a hurt'in to the ole wallet!

Hi All... I'm behind in my posting here!

I'm going to do this a little different:

Before Starting Treatment:

Meds:
Was tapering off Pred, and on Immuran
Stopped Pred and Immuran about week 2 of this treatment

Symptoms Prior To Starting Treatment:
Loose stool, Urgency, D, Mucus, Blood

Food Sensitivities:
Any wheat or whole grain, rice, starchy, or highly processed food caused intense D, bloating and gas, mucus, blood and in the case of wheat it caused a terrible, foul smelling "putrified" kinda poop... was nasty stuff...

Colonoscopy Results Roughly 3 Months - Prior to Treatment:
Surface Inflammation, Multiple small ulcers throughout my entire colon (looked like red dots everywhere) I was not happy, but was still an improvement over my last.

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

Current:

Meds:
None - for a very long time....

Symptoms:
Mostly solid stool, twice a day on average I would say. Some days more some days less. Zero urgency, zero blood, almost no mucus 80-90% of the time. No pain, no gas, no cramping.

Food Sensitivities:
It hasn't been to long, but I can eat wheat now without much issue but I think to much leads to visible mucus so I only eat it on rare occasions. Rice pasta works perfectly and gives lot's of bulk and perfect poops in the morning. I can endure a meal or two of highly processed foods (i.e fast food at McDonalds) or pizza but if I go two days in a row I see minor mucus.

All in all I have lost the desire for this type of food anyway for some weird reason. So I essentially eat 90% SCD, Paleo type with rice pasta when I'm extra hungry. This morning I had another piece of that Starbucks Muscli bread that use to give me all the trouble. No troubles now though I rarely eat is unless I'm super hungry and there's nothing else around.

Notes:

I have to admit, sometimes I totally forget I'm ill... In fact last night I went out with a friend for a coffee and I was talking about it and said "I used to have Crohn's-Coltis".... I stopped after that and went silent... reflecting I guess over the last 10 years... I can't believe I even said that! But that's how I feel most of the time.

My body has totally changed: I put back on a bit of weight, I can exercise everyday and I almost have a somewhat muscular body now instead of thin and scrawny... I had a girl ask me if I exercised a lot, she said I have a swimmers body and that I was lucky!!! hahaha... I laughed my butt off at that. My sisters have commented as well.

I should have taken before and after pictures or something. It would be shocking.

Lastly, I'm going to ask my doctor to schedule a full on colonoscopy for me. Let's find out exactly what this treatment has done for my insides, not just my outsides. I suspect maybe minor inflammation still, but I'm not finished yet with the treatment.

I can almost give this a stamp of approval... almost. Let's give it another two weeks and dosage change and see.

Mark

Final comment. Aside from not knowing what's going on inside via a colonoscopy, I'd have to say this treatment has had a better effect than Remicade, Methotrexate and strict SCD diet all togher at the same time. I'm 1000% shocked by this. Time will tell if it hold though. Fingers crossed.

And sorry I have been busy getting back to life here...

OH - and one final note:

This treatment has some intense up's and down's and symptoms come and go, get worse and better through the dosage changes. It also SERIOUSLY messes with you mind at time like depression, or super happy etc. Bouncing back and forth. Some days/ weeks/months I was extra crazy tired as well. It made it hard to work to say the least! I wasn't sure if I'd make it through.... but I did.

If you try this treatment just be prepared for some weird and tough days/weeks/months... That's not mentioned in the literature they provide. It may impact your ability to work. Have patience, stick it through and hopefully you will see the same changes I did.

thanks Mark for posting. I was discourage there for a bit yesterday, I picked right up again this morning with my supplements.

lemonhead I've never had anything related to hormonal and uc, but you sure are on top of this hormonal stuff LOL I just notice getting irritable or crying a few days before my period.

Darn you had to take a shot today, that sucks! A lot of blood, numerous times to the bathroom??

Hi Lemon,

Yes I'm still on 2 tablespoons per day. Seems to be working. Sucks on the cost but at the same time it's working... so its a fair trade at the moment. I've priced it around and it's expensive everywhere.

Also, throughout the treatment I've had good and bad days. A week or two ago I swear I saw a tiny bit of blood one morning, but I just stuck with it and the next day(s) were fine. Again I'm sort of pre-programmed to revert to healthy diet or SCD as soon as I have even a mild symptom.... just from all these years of following it. At this point I can't say if it helps, but as soon as I have a full day of SCD I have zero symptoms whatsoever the next usually. So I think it does play some kind of role in my case - though I think we all signed up so we can eat whatever the heck we want. Still though.. I can;t deny the progress.

Awesome - Do you sleep through the night well?

For me the tiredness lasted months and months and came and went sometimes depending on the dose... and still does now and then. I have found that if I'm in bed by 10pm then next day I'm good and will wake up well rested around 7am without an alarm clock. If I stay up till 11 then it's 8am. It's like clockwork that for me 8 hours a night is the right amount as it takes me an hour to fall asleep sometimes once in bed.. BUT if I stay up late and set an alarm, or wake up before that full 8 hours of sleep I'm tried during the day. If I do that more than one day in a row - I'm very tired during the day - until I take the extra time to sleep long and catch back up.

What helped me earlier on was to do what Dr. Stein told me. Turn off my alarm clock and just sleep... Even if its for a whole weekend. And take naps on the weekend if I'm tired. He said eventually you catch up and settle into a pattern. Seems he was right. But it was not easy at all... It;s hard to sleep when you have a lot to do. SO you just have to make the time to do it.

Once I get caught up I get tired when the sun goes down and I awake when the sun rises... no alarm. But again, it's easy to screw up by not going to bed properly and staying up late and waking up early and not properly rested.

It's weird is the bottom line...

He told me this treatment does wonders for insomnia...

Well, no I don't sleep well. I have a turd of a dog who thinks that it is a great idea to hunt at 2, and 4 am. And a husband who snores like a freight train. I have been wearing earplugs (for both issues), but it doesn't always work. Sometimes, I resort to sleeping in our guest room. I do nap when I need to, but if I do it for too long I can't sleep at night. It is crazy. Vicious cycle. I will try to go to bed earlier and see if that helps. But man, I am going to have a whole lot of DVR'd stuff to catch up on!

Mark I'm on week 4 I think now, three urine tests in, when did you start seeing results??? I went back and I thought it was right after starting, IDK, just tell me please. I can't read back that far LOL

OH WHY IN THE HECK AM I CRAVING CARBS AND NOT PROTEIN ANYMORE?

Thanks

I’m going to contact Dr. Stein this week and get started on this treatment but I’m curious about one thing. Was anybody in a bad flare when they started?

I’m tapered off of Pred a few days ago and my symptoms have been pretty bad since. My GI gave me the option to go back on Pred but I really don’t want to. Some of the side effects I had while on it concerned me.

I was hoping to do the amino acid therapy without being on any meds. I realize there will be a lot of ups and downs but I just wanted to know if anyone was having really bad symptoms when they started - bleeding, cramps, going 10 times a day, etc.

Thanks

I've been in a bad flare, no lie, for 8 years!

Thanks so much for the responses. I’m going to go ahead and try it. I’ve been in a flare for about 4 years and I’ve tried everything but nothing has really helped. I’d been considering surgery until I heard about this treatment. I know it's not cheap but the worst case is it doesn’t work and I’m out some money.

Hi Miracles... following very closely on how you're doing.. from your post on the last page it sounds like your symptoms & experience is very similar to mine. Interestingly enough though I did have a fantastic 6 months when I was pregnant. Other than that I basically live in the bathroom. My intestines are so inflamed that the poop cant get through- so while im constantly toileting, im also not actually clearing anything out- except blood and mucus :( If this works for you after 8yrs of flaring maybe it will work for me too. None of the drugs seem to work for me. Doc just keeps saying surgery surgery surgery. One thing I am worried about with this treatment though- how am I going to do it being a single mum with a 1yr old? Everyone is getting absolutely exhausted right? And depressed?

Lemon,

How many weeks have you been on the treatment and how much has it cost you so far?