- Joined
- Aug 27, 2016
- Messages
- 11
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
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:
