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Crohn's Disease Forum » Your Story » New, MY Story - Crohns 10 yrs, New MAP diagnosis


08-27-2016, 06:41 AM   #1
wombatgirl
 
Join Date: Aug 2016
Location: Townsville, Queensland, Australia
New, MY Story - Crohns 10 yrs, New MAP diagnosis

Hi

Thanks for the add to the forum. I've had crohns for about 10 years now. I managed to get it in remission through diet and supplements for a few years, then in 2012 it came bad really bad, really quickly. Docs could do nothing, and in the end I had all of my large bowel removed except the rectum which they eventually reattached to my small intestines (I had a colostomy bag for a while). They said it would be curative, it wasn't, though I hadn't been on any medication except some suppositories for a few months.

Then a couple of months ago I had a perianal abscess, and when they did an MRI they discovered a small fistula. At that point I really started doing some research again, and again came across MAP (mycobacterium avium subspecies paratuberculosis). I had come across it years ago but my GI doc dismissed it despite me thinking it really might be relevant. Turns out I was right. Then I could find no tests, this time I found one in NZ, through Otakaro Pathways. They culture your blood, and mine tested positive to all the forms of MAP (with and without cell wall, persistor cells, 'daughter' aka viable cells, colonies) (actually 'Son of MAP' - this is why they call it son of map, from thecrohnsinfection.org video transcript with John Aitken: "The mycobacterium species probes are positive. The MAP probe is positive. We have a number of virulence factors that we have positive results for. Is it MAP? Sort of. One of the problems is that some of the virulence factors we are getting are not traditionally associated with MAP. There is some sort of hybridization going on. We actually call it Son of MAP'))

I got the results last week, and emailed the report and information to my GI. Waiting to see if she will prescribe me the anti-map antibiotics, which I hope she does (not that being on abx long term is thrilling, but being on infliximab and immune suppressants is even less so, and I think less effective against MAP).

In the meantime I am looking into herbal treatments to start as well (planning to do both abx and supplements). I have found Lauricidin to be very helpful (it destroys the cell wall of viruses and bacteria, and one of the interesting things about MAP's cell wall is that it is very resistant (mycolic acids), and it is the reason macrohpages often become infected and a source of disease rather than being able to destroy MAP. I am also getting some NAG to help heal the bowel (though my last flexisigmoidoscopy showed no active disease in the bowel despite the fistula. There were only a couple of small ulcers, which I think were healing. I had been taking Lauricidin (at least 4 scoops a day, sometimes more) a lot in the few weeks preceding that. It also healed a cluster of plantar and thumb warts I had had for over 15 years that had been resistant to all treatment.

I have also been taking a concoction of TCM herbs, plus using wild oregano oil topically on the small abscess (didn't want any more surgery on it. They had drained it once and it came back). And starting taking cinnamon supplement. That all seems to have helped the abscess at least, which burst on its own and seems to be improving.

With the herbs, I am looking at natural antibiotic herbs, as well as supporting the elimination pathways (lymph, liver), plus herbs for blood flow. Plus I will start using biofilm herbs once I have the abscess under control properly.

I did try gcmaf cream (which is great for cancer and a number of other things, and does work), before I discovered that MAP infects and spreads through macrophages. Gcmaf activates macrophages, but it doesn't fix the problem of macrophages not being able to eliminate the bacteria. And it did indeed make the abscess worse, and my eyes (which had been sore lately) (both places where I was putting the cream). On the plus side, it had been improving some scarring on my face, so I was disappointed to stop it!

I have mostly followed the GAPS/SCD diet for the last 10 yrs, though after getting my colon out and believing the doc who said it would be curative, I did eat sugar and wheat, fairly regularly. I think that made things worse. I have just started the Wahls Paleo diet (though aside from 9 cups of veggies a day and limiting my protein, I had been pretty much doing it anyway), which I think is helping in that it supplies all the micronutrients to help heal and support the body. In my experience though, diet alone is not enough, though it has for me been an important support in times past. One thing I had to learn was not simply to swap sugar for honey and fruit. I strictly limit fruit now and no juice. Ah well, the sacrifices we make

So now I'm just waiting to hear from my doc!

Forgot to say, other supplements: Vit D 10000IU/day, NAC 2400mg/day. st Mary's thistle 2x/day, butyric acid 2x/day, iron, zinc, magnesium, kelp

thank you
Rebecca

Last edited by wombatgirl; 08-27-2016 at 07:23 AM.
08-27-2016, 08:05 AM   #2
Clash
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Why would your doc tell you that your CD would be cured by removing your colon? That's true for UC but not CD. I hope that is not the GI you are still under.

I'm going to tag Irishgal she's on the MAP protocol of antibiotics and can give her experience.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
08-27-2016, 08:24 AM   #3
wombatgirl
 
Join Date: Aug 2016
Location: Townsville, Queensland, Australia
Why would your doc tell you that your CD would be cured by removing your colon? That's true for UC but not CD. I hope that is not the GI you are still under.

I'm going to tag Irishgal she's on the MAP protocol of antibiotics and can give her experience.
No, fortunately I'm not under that doc any more. My regular GI was not working at the hospital at the time. That guy was quite closed minded about a lot of things actually, and kept insisting that I let him do the 'doctoring' ... I never had that much faith in his ability to be honest.

Thanks for tagging Irishgal. I sure hope my current GI comes around with MAP. I sent her a whole heap of info. But in the meantime I am just exploring herbal options as well.
08-27-2016, 03:18 PM   #4
irishgal
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Hi wombatgirl - I've been on AMAT since Nov. 2014 and it have been fully healed. I'm glad you found the site and you are already ahead of the game by getting tested with John's lab. Sounds like you have a pretty decent human MAP infection! Have you ever tried antibiotics like flagyl for your CD? If so, how did they work? Some patients have told me that they feel better when the get antibiotics for an unrelated issue, and their CD gets better as well.

If nothing else, you're lucky you're in Australia! You have Prof. Borody available. If your current doc says no you could either 1) have her talk to Prof. Borody to get more info or 2) sign up for an appointment with this clinic. I know Prof. Borody's website says that he is available to consult with doctors about AMAT. I think it's excellent that you've found some natural options to deal with MAP, though I'd agree with you that in many cases, diet alone is not enough. For biofilm, you could either try krill oil or PharmaNAC.

There are also two great Facebook groups of Crohn's patients who have excellent info and support each other surrounding MAP and AMAT theories. If I can answer question or help, feel free to message me! Hope your doc says yes and you find full healing on AMAT!
__________________
Currently on: Anti-MAP therapy and loving life! Full remission since Jan 2015. Clarithromycin, rifampin and low dose naltrexone. (Levofloxicin had too many side effects so discontinued after 5 months.) Resources on human MAP and Crohn's here: HumanPara.org.

Past (failed) Treatments: Remicade, Humira, Prednisone, Pentasa, Azulfadine, Lialda, No gluten/dairy/sugar/coffee or processed food in general. Flagyl worked but not long term.
08-27-2016, 08:52 PM   #5
wombatgirl
 
Join Date: Aug 2016
Location: Townsville, Queensland, Australia
Hi Irishgal

I'm so glad to know the abx works! I'm so glad I found John's lab, wish it had been around 10 yrs ago. It's such a leap of faith without knowing you definitely have MAP, especially when docs are resistant to it.

What are the FB groups?

I have been on flagyl. When I got the abscess about 5-6 weeks ago, they gave it to me after I left hospital (may have given it to me there too). It did help get rid of the abscess, and it came back when I went off it. But it alone didn't heal the abscess when I went back on it. I found the lauricidin and Chinese herbs helped actually, and then my script ran out anyway. I think the abscess is healing now anyway (it burst yesterday). With other crohns symptoms, since I had most of my large bowel removed I found I had a lot of BM anyway, but since I've been on the Wahls Paleo diet that has reduced a lot, to a manageable 4 a day (was 8+).

I might check out Prof Borody re getting him to talk to my GI re AMAT. She's a nice lady, so hopefully she will be open to it.

Interestingly, John said flagyl has anti-MAP activity against the persistor forms.

Thank you so much for replying!
08-28-2016, 11:24 AM   #6
irishgal
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Hi Wombatgirl - yes, therer are a number of people who have had success with AMAT. Som who didn't improve as well, like every treatment. I always felt a little better knowing for sure that I had the pathogen too. Glad you've found a way to manage your symptoms for now - diet can do a lot for some. The Facebook groups are:

https://www.facebook.com/groups/1558...?ref=bookmarks

https://www.facebook.com/groups/4259...?ref=bookmarks

Anyone who wants to discuss MAP or AMAT (plus other interesting Crohn's stuff!) is welcome.
08-28-2016, 09:50 PM   #7
wombatgirl
 
Join Date: Aug 2016
Location: Townsville, Queensland, Australia
Thanks Irishgal, just joined the groups.
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