Andy.

[Andy108]

I am a teenager, and a professional jazz/funk/soul/reggae musician and I have had Ulcerative Colitis for at least 9 years.

My disease has interrupted, my international touring and I have earned the nickname "Dopey" because I have been so iron deficient that I have not been able to think straight. When I was studying my marks were dramatically worse when my disease was out of remission.

I have found specialists in the area where I live to be of a poor quality (some better than others)... one charged me $400 and dismissed me after 3 minutes, refusing to answer my questions. The specialist that I saw in New York when I was last on tour was also average.

I have had little success with medicine, and I am very interested in (high quality) clinical trials of new and/or alternative treatments. I am especially interested in parasitic worms as a possible preventative of relapse. Cortisone makes me go nuts, I have an extremely adverse reaction to it.

I have considered tobacco smoking, I am ashamed to say.....I have had incredibly good results from a herbal medicine that it would be inappropriate to discuss here.

Nice to meet you all, I can't wait to converse with you and learn from your experiences and research.

 

[crazycanuck]

Hey there welcome to the forums and impressive career as a teen. What meds have you tried so far?

 

[Jenny06xx]

Hey andy welcome to the forum
And that herbal medicine (marijuana) is always being discussed here lol
Some have tried it including me and agree it works well whereas others would never touch it.
Feel free to discuss anything on here the forum monitors will tell u if your post is not appropriate I'm sure.

 

[crazycanuck]

That particular topic is reserved for The Zone haha. After 50 posts and assuming your 18+ then pm an admin (dingbat, nancy lee, or david) for the password at that time).

 

[Guest]

an official welcome to the family, Andy

just a note for all you guys.. CrazyCanuck is right in that all discussions on the use of MJ have to be in our password protected area, for the protection of minors on the internet, and for legal reasons..

and although it's true that we normally ask 50 posts and at least one month's active membership before we issue the password, in certain cases staff will use their discretion and give the password out earlier.

 

[xixo]

hi andy!
the only "alternative treatment" i know is "live your life" thats what ive been doing and its working! lol

i feel the same way about the thinking part.. you should ask your gi for some vitamins and stuff like that...

:hug:

 

[mizgarnet]

Hi Andy-
I use LDN. The only side effects - about a week of restless sleep with some wild dreams and a funky "high" if I stayed up to long after taking it. Doctors do not like to prescribe it. There are studies on it. Search for low dose naltrxone on the net. I have had very good results in the 4 weeks I have been using it. I also use Boswellia for inflammation, lots of healthy oils, George's Always Active Aloe Vera Juice, Super B complex, and others. Go to crohnsboy.com. He is a young man with Crohn's who has quite an attitude. He is a good guy and can help you with the natural journey.

Hang in there kiddo, this Nonna is still kicking a.....:wink:

Wendy

 

[Andy108]

I am 18 years old, can't wait to get that password as discussion of that 'particular herb' is my main motivation for being here.

Has anyone out there tried parasites? I know it's radical, but a friend of a friend in England (with Crohns) got them on a trial and has done extremely well.

I am surprised that naltrexone is being used for UC, thanks for all of your replies.

 

[Guest]

we have an LDN forum here, Andy.. also discussions on the parasite treatment - do a search on Low Dose Naltrexone, and Helminth....

i've tried LDN twice now, the last time quite recently - it didn't seem to help with my Crohn's symptoms but did make a difference in other ways, so i have mixed feelings about it. maybe i'm one of those few it doesn't help, as i've heard amazing reports on it for many other patients, not just with Crohn's but many other conditions too...

 

[Andy108]

hi andy!
the only "alternative treatment" i know is "live your life" thats what ive been doing and its working! lol

i feel the same way about the thinking part.. you should ask your gi for some vitamins and stuff like that...

:hug:

Sorry Xixo, but that first part does not make very much sense to me?, love the positive attitude though!

As far as going to the GP for alternative treatments.......well, where I live all of the GPs and specialists (so far and I have seen a lot of them) are unwilling to even discuss anything except sulfa drugs and steroids, and possible surgery....they are radically close-minded.

I want to try parasites, as the current drug that works for me is highly illegal in my state. I have even considered moving to a state with less backwards laws.

Cheers Mate.

 

[crazycanuck]

Can I ask why your wanting to try the parasites?

 

[Andy108]

I am DESPERATE to avoid surgery! and a friend of a friend in England with crohns has had magnificent long term results with them, she is middle aged.

I am currently just getting myself into remission (with the unmentionable herb).... but I have noticed that each time I have an 'episode' it is more severe and lasts for longer.....I have only had episodes when the herb I use has been unavailable to me.

I don't have forum skills, please excuse me.

 

[Guest]

I don't have forum skills, please excuse me.

Andy - any problems getting around or using the forum, just pm me or David, or shout out here in your thread - i'm sure someone will be able to help you if we're not around.