Anti-Map Therapy

I don't mean to sound like I'm touting LDN because the jury is still out on the efficacy of LDN for my daughter...it will take a little more time to know for sure. She switched to a strict SCD diet to try to boost the efficacy of the LDN. Her symptoms were under control before the LDN was started, so we thought it was worth a try. The results of the second clinical trial for LDN have not yet been published so nobody knows, for sure, how effective it is for Crohn's.

mastersmom, thanks for pointing out one of the main limitations of LDN. I hope the anti-MAP cocktail does the trick!

Hi dietcoke-I started the thread and am doing okay on the Anti-map therapy (I guess). I haven't noticed any significant changes in my symptoms yet, but both doctors tell me to give it at least three months (infectious disease doc and gastro doc). I've been going about two months now and about one month consistently without stopping. During the first month, I had some side effects, so we had to do some adjusting. Apparently I cannot take Rifabutin (causes fever and flu-like symptoms for me), so he switched me to Rifampin. Doc said Rifabutin is better but that Rifampin is a good second best. So now I'm taking Ethanbutanol, Rifampin and Clarithmycin. The flu-like symptoms have disappeared. My latest battle has been yeast infections, which I successfully treated with over the counter meds and acne on my chest, back and face (ugh!!). These things are very annoying and often make me feel like just quitting the therapy; however, I tell myself to at least give it the three months to see if I notice anything. Boy, wouldn't it all be worth it if it worked??? My crohn's symptoms are the same as they ever were. My blood work is not elevated, so I'm not "flaring" I guess, but I do have long mornings in the bathroom and urgency/incontinence issues still. It certainly affects my life on a daily basis.

The doctor said they are seeing good results in other patients. I think they are treating approximately 10-12 people. During our last visit, the doc mentioned "miraculous results" in one patient but did not elaborate.  I will keep you posted. Best wishes to you!

hi Roni,
I have not noticed any decrease in symptoms yet- but I have only been on the clofazimine since about July 21. I am currently on clofazimine, clarithromycin (biaxin), and rifampin. Rifabutin is not available in Canada, and clofazimine is through the Special Access Program through the government (so free if you get accepted). I have been on the other 2 probably closer to 3 months but I hear it really doesn't do much unless you have the trinity :) Infectious disease Doctor wanted a staggered start to see if any of the drugs would bother me. I also go in for monthly bloodwork to check my enzymes (they can screw with your liver).

I am wanting to give the therapy a solid 4-6 months with all 3. I hear that if it's going to work, you should be noticing something by 6 months.

One thing, the only differen ce I have been noticing is that I feel less like infection. I used to feel like I just had infection coursing thru my veins, and got tons of huge abcesses, which needed medical lancing and packing for weeks, In one visit a few months ago, they lanced 6 in one day. Another one started as an abcess or erythema nodosum and then turned into pyoderma gangrenosum. It was deep, very deep, and then my whole calf got cellulitis around it. Talk about painful. I wanted to send my disability case worker an 8x10 glossy! LOL My leg was literally purple. I was in ICU for 5 days, and have a gross scar. (oh yeah the whole thing went septic..)

Sorry for the long read but my point is, since taking the 3 drugs, I have not had any major abcesses or erythema nodosum nodea. I have had a few small abcesses that drained on their own, but none deep and not as many. But I am not 100% sure it is the drugs, it's either them or the omega 3's, bc I started taking them around that time too- to reduce infammation.

well, MAP reproduces so slowly, they estimate at least an average of 15 yrs before symptoms start appearing. SO if you were completely healed, then the day after your therapy stopped you were re-infected, you would still have 15 good yrs before it starts becoming problematic again. Then you can go back on your anti-MAP cocktail.. I would pretty much kill for 15 yrs remission!

I don't know, I find that hard to believe. Isn't our entire food chain pretty much sprinkled with MAP? And then the people genetically suseptible (sp) to it manifest sysmptoms down the road.. but if it's months from onset of infection, wouldn't we be seeing way more CD symptoms in babies and toddlers? Their main food source is milk@!

Hmmm.