Skin changes from anti-map tratment

I've been on the Anti-Map including clofazimine for about four months and haven't noticed any skin changes.

Is it working for you guys?

rblock, what were your symptoms like before you started treatment? Where was your inflammation located?

Hi Rblock06,

I haven't posted on this site for years but I have a wife and daughter with Crohn's
and treat it with SCD and antibiotics. We know Dr. Chamberlin and know of Dr. Kuestner.
I hope you don't mind if I could just ask a few questions.

1. Why Rifampin versus Rifabutin/Mycobutin? Most MAP doctors (or Lyme/MS or other doctors) agree
that Rifabutin is a better intracellular antibiotic. It also has worst side effects. Is it a cost issue?
Rifampin is much cheaper as there is a generic available.

2. How did you get Clofazimine/Lamprene? It has not been available in the US since 2005 unless you
write up an IND request and get it for free from the Hansen's disease center for Leprosy. Did
a Dr. do this for you? Is there another way to get Clofazamine? My wife's doctor would not go through
all of the work to make this happen.

3. "You have a 50/50 chance of getting the flu like symptoms which actually isn't a bad thing as doctors have
noticed better results in those that get the flu like symptoms".
I know that is what various Dr's say but the flu-like symptoms can be so bad, one must stop all other
activities. My wife gets completely knocked out and also suffers from panic attacks after stopping
the antibiotic (they go away after about a day). Very scary. Dr. Charles Stratton has much information
on this topic regarding the side effects of these antibiotics when used to fight another intracellular
infection for MS, Chlamydia Pneumoniae.

She is never able to continue on this combination of antibiotics because the side effects are too extreme.

im on rifabutin 150mg, clarithromycin 500mg, clofazamine 150mg, vancomycin 750mg daily but this is the introduction dosage and then it gets bumped up in 5 weeks.

I have been getting lots of bloating, a bit of heartburn but more like burping up antibiotics taste than burning. Also I felt a little woosey when i first started but that has already faded. Im 4 dys in and already noticing it working and i cant wait for my tan!

Hi everyone, This message is mainly directed towards rblock06, but generally towards anyone doing MAP infection therapy. My son was diagnosed with Crohn's disease in 2007, and due to drug allergies, ended up having to take Humira. It causes all sorts of side effects for him, so we have been hoping for some other therapy and have watched with interest the MAP theory for years. Our docs in Seattle claim it isn't a viable treatment. Have any of you who are using a MAP therapy feeling like it's helping? If so, can you tell me where you are getting your treatment? At this point, we are willing to consider relocating. I've heard of Dr. Chamberlain, but don't know where he sees patients. I found a Dr. Chamberlain on the web who responded to a a question regarding MAP, but wanted to confirm that this is the right guy. He said he treated patients in Billings MT. Any info you can give me regarding MAP therapy would be so greatly appreciated!

Thanks!

Stacey (Quinn's mom)

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 to hear real AntiMAP patient stories, all of that is on a new website: thecrohnsinfection.org. There was a big research conference on this in August, and those videos are there too.

As for me, I went on AMAT in Nov 2014, subbed levofloxicin for the unattainable clofazimine with Dr. Chamberlin's help, and was better in 6 weeks. Literally, deaths door to remission in 6 weeks. Now, I know it doesn't work like that for everyone, but it has a better remission rate than any other Crohn's treatment. I had to drop the levo after a few months due to side effects, but still feel like Crohn's is thing of the past. The GIs all resist this, but I'm posting so at least you can be informed about your own treatment!

I had to do all of this research myself, so hopefully this site will pull all of that research together and offer an alternative for those who think it would work, or who are out of alternatives like I was. Be well friends.

It would be awesome if some of the older posters on here could give an update as it's been about a year. Are they still on the therapy? How they are feeling? etc etc.

I'm sure many would be interested in hearing from them.

EDIT: also please keep us posted on krw135 ! Best of luck.

krw135, which antibiotics do you use? What dosage? I hope you'll be able to get into remission and have a healthy life.

Thanks krw135.

Hope you find some relief. Aside from the obvious, I'm very curious as to the effect it wall have on your arthritis symptoms - if any.