Kate548 - I saw your post today on the other thread that was just locked, and you mentioned that Qu Bio worked really well for you, but you had to switch to Entyvio after the study. I thought I read...
Yes - I think the RedHill study is an excellent option is your husband qualifies, especially due to the new open label arm....
Hi Tea - I fixed the link above so hopefully it will work. Forum posts seem to shorten it for some reason, making it inactive. Let me know if you still have trouble. As for the naltrexone, that was...
Prof. Thomas Borody's latest research from October 2016. He did a small study of AMAT in 8 treatment naive patients. All went into remission between 4-21 weeks. Also, the patients experienced deep...
TDeanna - don't know of any docs in Ottawa, but maybe check out the RedHill locations and see if any of these locations are somewhat close to you, then see if the supervising doc has a private...
SCM - OMG, how horrible! I completely feel for you and wish I could give you a huge hug. That's so incredibly painful. Have you considered AntiMAP treatment? If it's vulvar Crohn's, aren't they...
Just got this Dietzia article from Dr. Click on the site. It's a good summary of the published research and gives some interesting background about how it all started. Plus, I believe Dietzia is...
I had a terminal ileum resection with an ileostomy, ileostomy reversal and then a small hernia repair around my belly button in between my two children. First was presurgery, second was after all of...
Hi Canada Mark - you're awesome. Thanks for thinking of our group! I posted it in our new Facebook group a couple of days ago because I thought the same thing. What a remarkable story. I think with...
Hi Brian, I'm happy to help if I can. Email me at [email protected] and we can discuss....
Awww, you're so kind! Happy to tell you my regime. I began on 500 mg clarithromycin 2x daily, 300mg rifampin 2x daily and 500 mg levofloxacin once daily. I had to drop the levo due to terrible joint...
Hope you find something that works! Fistulas approach hell on earth. I'm always willing to share the info I have. I figure, why bother hanging on to it if there's even one person who could benefit. I...
Lucky you in Australia! Head straight to D. Borody at the CDD in Sydney. He has published a bit on fistulas. Or you could have your doc consult with him. I get the feeling he's a known entity over...
Cooltiger - if a treatment is working well, I'd hesitate to discontinue or change anything. If you still have issues with fistulae and you think that your current regime isn't working to fix those,...
momof8yroldboy - I wish I could just give you a huge hug and make it all go away. As a two decade Crohn's sufferer myself and the mom of an 8 year old, I can't even imagine how horrible this has been...
This was me too. Even though my GI symptoms would occasionally subside, I never gained weight and always felt tired with joint pain. I take a lot of anti-inflammatory supplements, like bromelain,...
Hi All, I just came across this older thread and have had huge success with AntiMAP. I tried everything and after two decades, I failed it all. I have been on AntiMAP for 13 months now and feel like...
Hi edenenix - just realized I never replied to you! Yes, Crohn's is a rich man's disease. There was something about that in another forum. I'm so sorry you're not only suffering with Crohn's, but...
Hi Gfrazer, Nice to meet you! Glad AMAT seems to be working for you. I just checked my journal because I wanted to make sure about the timelines, and it seems that after only a few weeks I was...
Interesting thread. I think Crohn's comes from a multitude of factors. Clearly in my case it's genetic, since my family is littered with "autoimmune" diseases in every generation. I was breastfed...
The GIs won't mention AMAT because it isn't an approved treatment pathway in the US. All of the meds are FDA approved, but the combo itself is not approved for Crohn's. That study is being done now...
Hi Edenenix - firstly let me say how sorry I am that you are suffering from this awful disease. I have a friend in a similar situation, and I know how truly disabling it is. I was very sick with...
Sorry Bucko - not much help in the constipation depatment since mine always went to the other extreme, but what about some natural remedies? Prune/plum/apple juice, trrying to get more healthy fiber....
Bucko - sending support and hugs. Yes, it's a terrible disease that is poorly understood, and sometimes those close to us delude themselves that we're just complaining when in fact we're terribly...
Cholestyramine also helped me a lot after a resection dealt me watery D 15+ times a day. VSL#3 also helps. I hope you find some relief!...
If you're looking at alternative therapies, you may want to consider AntiMAP. TheCrohnsInfection.org has some great resources. Obstruction can be a risk, so you may want to consider the ramp up...
Just wanted to send you a hug and some support. It's a terrible disease, and the emotional effects are as bad as the physical effects from what I've seen. FMT seems to work very well with CDiff. I'm...
Thanks Mark! Yes, my GI (super smart researcher at a huge teaching hospital) finds this theory unbelievable. We'll see if this sways him. I believe eventually John's team will publish, which will be...
John Aitken just forwarded his poster from the American College of Gatroenterology meeting last weekend. It discusses a relative of MAP (he calls Son of MAP) found in the blood of Crohn's patients....
Hi Mouse - I felt the same way about the low residue diet. Not very healthy, but it made me feel a little better. One of my GIs recommended the FOD MAP diet, and I had a lot more success with that....
Canada Mark - About your inquiry about Old Mike's DHEA question as related to EpiBro, I didn't want to ask Dr. Chamberlin since he's been busy preparing for ACG in two weeks, but I did inquire of...
Bonus footage from the Chicago Crohn's MAP symposium! At the last minute, world renown gastroenterologist Dr. David Rubin, from the University of Chicago Medical Center, gave a presentation. He talks...
Canada Mark - as usual, I agree! Would love to see how everyone is doing. Most of them started around the same time I did. Hoping that they are all Crohn's free and too busy loving life to check this...
Hi All - I'm usually on the Crohn's forum here since that's my affliction, but saw that RedHill has a new MS drug they're trialling, which happens to be the same basic thing that put me into full...
Hi All, First off, I hope you've all found some relief from your Crohn's symptoms! It's a horrible disease I've dealt with for over two decades. If anyone needs any info, or someone mentioned wanting...
I also had lots of joint pain. Weird since I was only in my late 30s. It would go from one joint to the next, last for a week, subside, then come back in a different spot. Never got to a...
Dr. Amy Hermon-Taylor's talk about the MAP Vaccine from the Chicago Symposium is now available at TheCrohnsInfection.org. http://thecrohnsinfection.org/symposium-information/...
Wow Canada Mark - Old Mike is a smart guy! Thanks for linking me to the other feed. No idea if this is the case or not with DHEA. I'd have to do a lot of reading and research to comment with any...
Canada Mark - yes, a crime against humanity IMO. I wonder if AIDS patients will eventually use this as an off label use like us Crohn's patients use other meds off label! Still, I'm cautiously...
Dr. Chamberlin's Immunikas and EpiBro talk is up! Dr. Amy and the MAP vaccine are next. http://thecrohnsinfection.org/symposium-information/...
Very interesting Mark! Maybe the Canadian chapter is more open to MAP thain the US. I don't find many GIs open to even discussing it, but I know there are some that will. I initially looked on the...
Hi pb4 - I know I always get irritable when I don't do my yoga! When I was sick I felt like I'd have irrational mood swings, which was very out of character for me. When I got better, they stopped....
pb4 - yes, I know what you mean about the presentations. Out of fairness to Dr. Amy, (and all of the presenters), she was severely jetlagged and had just come from interviews with two documentary...
John Aitken's talk about Son of MAP is up! http://thecrohnsinfection.org/symposium-information/...
Hi Canada Mark - Thanks for posting the new study. Very interesting about patient 10. Woukd love to send that sample to John Aitken to see what he could do with it! PCR IS900 isn't always a reliable...
Hi NiceCupofTea - sorry I didn't answer your question completely. I go off on tangents sometimes! Thanks for reminding me. My Crohn's was primarily located in my terminal ileum, so that would fit...
pb4 - I'd suggest at least give AMAT some real consideration prior to surgery. If nothing else, it doesn't work and you end up getting the surgery anyway. But if it works, you are better!! Weird...
Hi pb4 - I feel the same way - I wish my GI would be directing this as well. It's a pain that I pay the docs this much to figure out my own treatment. As for the levo, the there are different combos...
Hi pb4 - maybe your doc will be good with AMAT if he's open minded about the other treatments. That would be excellent to have your GI on board! He may be one of the few who would consider this,...
I agree with Mark - most docs have no idea about this or act very evasive when you mention it. The cynic in me says it's because the AntiTNF companies buy them great lunches and fund conferences, but...