Amino acid therapy update-continued thread

I have been on it for 2 months and no tryptophan or arginine have been added to my protocol.

Miracles-I don't know how you are hanging in there. I am praying you find some relief soon!

First week of August will be my three month mark of totally being on amino acids, I think that's a fair time to see some kind of progress not going backwards like I have been. Don't you all think?

No not at all still going just blood, sometimes my butt just spasms and it pushes only blood out then it could be yellow liquid, then green like yesterday. No he kepts saying chrons to me but I had to tell him I have UC. He's so nice. I just want to stop it all to be honest but they are sending me urine test and supplements two day. It higher up in my gi, I'm eating then it's fermenting or something doesn't get digested and just passes through in fast transit time.

This is his latest email I cut and copied for you to read :

Cipro is a real poison for any patient and you should not take it. It contaminates the body with fluoride and can cause serious muscle and joint pains.

 

I do believe that a medicine will catch and stop the problem but if you feel you need the Asacol for the time being than you can take it.

 

Yellow diarrhea is not necessarily a problem with a gut infection.In your case it is still the Crohn'sand what is happening is that there is a very rapid transit of stool from the small intestines at the level of the bile track and bile duct right on the way out to the end of the colon and so the stool does not have any time to convert to its normal color or to reabsorb the water that is in the stool to get a formed stool.

 

Taking Asacol for the time being, do not take any of the antibiotics.

 

I will be back to you as soon as I have a new dose recommendation from the most recently submitted a urine test and stick with the dosing you just got today.

 

Once again the current dose should be 4 neuroreplete twice a day, one D5 macuna, to cysreplete 3 times a day and 1 tablespoon or 3 teaspoons of tyrosine a day. Folic acid from my office.

 

No improvement here (two tablespoons tyrosine, 200mg http, 6cysreplete, 1 mucuna). I'll have my 4. dose change next week and my hope is still alive. Well I've already tried every other traditional and non-traditional treatment so that's my last option. I am going to do 10 urine tests at least but I hope that I won't need to do that.                                           

No miracles,
I didn`t have any terrible side effects like you but also no energy increase or smth. like that. Maybe you should try to Change from the powder to the caps. once again or maybe the dosage of tyr. is just too high for. I know what you are talking about cause I had that kind of accidents many times at the university and once in the bus, its horrible but I would nevertheless stick to that therapy for some more months.

I'm doing better :) stopping the treatment. I'm not having accidents, haven;t since last thursday. I'm still getting cramping and pooping though.

I sent in a stool test to Great Plains today, I have a referral to an infectious disease doctor, so I'm still trying to get some answers.

In the mean time, I started Pentasa, I just had to start something for my inflammation. I was hoping the amino acid would be my go to therapy, but it's not, which is ok. I emailed Dr. Stein I said I would continue for using as pain relieve and energy, but not in the doses he talked about. I lost 9 lbs in two weeks! I'm 111 right now, normal is 117, just started back to really eating again and holding it in for a little while.

I wrote him and said....you're not listening to me, I have UC not chrons, there is a difference. He never wrote back. I guess my urine test results will be today, interesting to see if he'll contact me.

Therapy has stopped, not completely ruled out, I sent back my last package$360 and looking for a refund. That will help me too. How are you feeling Lemon??

 

Mark, I have crohns/colitis myself and think that this can be perhaps something I can goto in the future is I had to. I wanted to ask you if you ever had a IgE and IgG tests done? I had the IGe test done and it identified shellfish as a food that I am really sensitive to. I was mistaken and thought it was only things like shrimp or crap and or lobster but after seeing and talking in detail about my ige test it is all shellfish. Of course I been eating clams and mussels clam showder and scallops all along! I am in the process of getting a Igg test soon. Needless to say I wont be eating shellfish again.

My ND thinks I need to get this done and will tell us alot about what could be causing some issues for me. How about you have you done this and what were the results?

Miracles-I am bummed that it isn't working for you, but glad you are feeling better!! I hope you continue to feel better and can get this under control soon.
Mark-I have UC, confined to the last 45cm of my colon and the therapy seems to be working for me. Not sure why. Not sure why it takes so long to get the right dosing either. I am still not perfect, don't know if I ever will be, but I am able to wean way down on my meds. Trying to get off Humira completely. Not sure if I can , but going to try. Yesterday I didn't feel too good, but I was having some severe cramps and I always have issues when I have hormone changes. But my bad day consisted of tummy grumbling and 3 trips to the bathroom....none urgent. I always seem to have a couple minutes to get somewhere now. I don't have hours, but I do have enough time to find a place without completely freaking out. My stool is still not big and fat, still skinnier than I would like, but it is much better than it used to be. so, all in all, I am doing pretty OK.

I’m on day five and so far things are really rough but that’s more to do with the fact that I’ve been flaring pretty badly for the past couple of weeks.

I’m going back on Prednisone starting tomorrow just because right now I can’t function. Dr. Stein said the pred wouldn’t interfere with the treatment. I don't really want to go back on pred but in all my years of having UC ( five or six) I haven't been this bad.

I started for two days but decided not to take it while on the amino acids, I was trying to just have only one thing in my system so it wasn't confused.

I just submitted a stool test and have an appt. with a infectious disease doctor next Tuesday.

Dr. Stein wrote back and asked for another chance, he has great bed side manner that I love! I said possibly, it's so expensive and I went through heck, I'm feeling better now just being on Pentasa, but I know that's not a cure for me, no 5-asa ever put me into remission. He said he'll go about it in a different way? We shall see. I won't stop pentasa.

Maybe try it for a day and see... It sucks if it get worse again, but remember when I was at my worst a few weeks into the treatment, mucus, blood, urgency and crapping all day long and just about to call it quits, he called and said subtract one D5 Mucana a day so down to one per day instead of two - and wham... things changed that night. Literally.

Since then it's been a slow road but I have never gone back to anything like that since.

May be worth a try... frustrating I know... I guess it comes down to can you tolerate say 2-3 more rough days or do you need to take a break and re-coup for a week or so. Get your bearings again.

Ok here's my one beef about his office and up to this point I've been saying how nice everything has been. I sent back my whole package of $404 and I called to make sure they got it and to credit me back and Beverly cops a attitude saying "I thought you were going to continue" and I said I will someday but for now I'm taking a break (I mean with the voilent diarreah and the losing of weight, hey I'm a little skeptical about jumping right back in) and I would like a credit, I said. "Alright" (with a pissy tone under her breath) She's the one who told me about her friend having UC and never got better and didn't mention her having this treatment and she's the one who last week too was so understanding of me crying telling how I just pooped on the concrete, but now that I want my money back, that's a different story.

Urgh so mad right now! Dr. Stein was nice and said let's try again, but he can never say what the Dr. from Wisconsin who I guess is there? I don't know that's what I was told, he never says what the doctor there is saying about my test results.

How long has he been doing this treatment for people with gut issues. He only told me about a 90 woman with alzheimer's who had UC and he gave her back 3 more years of her life before she died but her UC cleared up. Lemon you said he mentioned dementia, well what about people with true gut issues besides Mark?

Right now today, I just started with a little tyrosine, I'm not adding all the other stuff in right now. I have to take it slow, very slow, I can add the other things in as I go. This way I can see if it's just the tyrosine bothering me or is it the d5mucna or the neuroplete, ya see. I think it can be worked this way.  I like the energy and the positive mood I had but gosh, the gut was getting worse so if I can or we (Dr. Stein) find the balance, more power to us! I'll keep you posted. Hope you feel better Lemon!! I don't think amino acid therapy is a one trick pony, you need UC meds too to start with for a while. Pentasa and me are doing ok.