Anti-Map Therapy

There is a maintenance therapy but we never got to that point. (My daughter is taking Xifaxan instead because the anti-map treatment caused her white blood count to drop.) The people I talked with were continuing indefinitely. One man dropped one of the 3 antibiotics because it was causing a rash after he was in remission. I had read that certain doctors discontinued the therapy after 1 to 2 years. I don't think there are clear cut answers about this. If the person is infected with MAP and the antibiotics get rid of it after months of antibiotics and then they are discontinued, I suppose the person could be reinfected. I wish I knew all the answers but I don't think anyone does.

Question for those of you on the anti-map therapy - were you ever tested at the beginning to see if you have MAP? Or is the doctor just going on good faith so-to-speak that most of us with Crohn's have map? If you were tested, specificially what test did they do?

Thanks!
Stef

Thanks Tara. I was just curious. I'm 100% convinced I have map, but I hadn't considered map therapy until now. I was just wondering if I brought it up with my doc if there was a specific test he would make me get or if it's just speculative. Good to know.

Thanks mastersmom. Good to know. I started back with the ethanbutol and the clarithmycin (sp?) yesterday and will start back with the Rifabutin in three to four days. He thinks the Rifabutin is the culprit if there is one. He says we'll try one more time and if it doesn't work, try another antibiotic. Would love for this to work, of course.

I was not tested for MAP. I did not inquire about this but did read online that testing for it is discouraged because it's not accurate.

HA! I spoke too soon. Tonight I have chills, low grade fever, aches and fatigue. Guess I will call the doc in the morning. :-(

Tara, this is what one HW patient posted last year: it looks like the dose of clarithromycin and rifampin are the same as what you are taking.

 I do wonder why rifampin was precribed to her and to yourself...because Rifabutin, not Rifampin, was used in the clinical trials.

(Don't know why she was on Levaquin...haven't seen that combo for anti-MAP.)    

VIEW IMAGE craizy_daizy Regular Member VIEW IMAGE Date Joined Feb 2009 Total Posts : 50	VIEW IMAGE   Posted 6/3/2009 10:00 PM (GMT -6)
	I'm on 500mg of Levaquin once a day, 500mg of Clarithromycin twice a day, and 300mg of Rifampin twice a day (as recommended by Dr. Chamberlin). Also I'm on Flagyl (Metronidazole) 500mg twice a day...it's hard for me to say whether it's helping me or not yet since I don't have the bathroom issues many people have, i have a fistula right now though (had it since January). I've been on the three antibiotics for two and a half months, and flagyl for a few weeks. Only after starting the flagyl did I start noticing less drainage from it and less abdominal pain, so I'm not sure if it's Because of the flagyl or a coincidence, since I was told to give the antibiotics at least three months to determine progress.... craizy_daizy

Hi Tara,

Thanks for your feedback. I went to the doc yesterday. He does not like the fact that I am having the flu-like reaction and thinks Rifabutin in the culprit. So, he put me on Rifampin as a replacement. He says they have the same effect but that the Rifabutin is a bit more powerful against the MAP. However, since I don't seem to tolerate it, he is switching me. The nurse told me that I am not the first one interchanging the two. So, my regime is:

800 mg. Ethanbutol daily

500 mg. Clarithromycin daily (broken up into one 250 mg tablet twice a day)

And the Rifampin, which is being filled at the pharmacy now. I don't remember the dosage but can report back to you.

He says that later he would like to add Cipro to the mix as well.

He has not mentioned Clofamazine (sp?)

He told me that he has a total of 10 patients trying the therapy and is having good results. He did not elaborate. He says that it takes about 3 months to begin feeling better based on what he's seen.  And he said that not everyone is a candidate for the therapy.  So I asked why I make a good candidate and he said because I'm healthy. I took that to mean that I'm generally pretty healthy other than the nightmarish bathroom and stomach problems I have because of the Crohns. That's about all I got from him yesterday. He is an infectious disease doctor, working with my Gastro doc to prescribe the therapy.

Sigh...so I'll add the Rifampin tomorrow and hope for the best. I'm also going to make an appt with my Gastro doc. I'll let you know if I get any more specific info from him.

How are you feeling? Do your Crohn's symptoms seem to be improving any? Mine, which are long mornings in the bathroom, urgency issues and stomach pain are the same as they ever were right now, but I've only been taking the meds for about a month.

Oh! And the probiotics are highly recommended by my Gastro at every visit. He likes VLS#3. He specifically encouraged them when he sent me to the infectious doc too because of all of the antibiotics. I ordered the powder and try to remember to take it most days although sometimes I forget.

Before all of this, I took Xifaxan for four months, which pulled me out of a bad flare (bathroom all day and night). From it, I developed a yeast type rash on my bottom (ugh!), so I started loading up on the probiotics and yogurt. It went away, so I guess it's a good idea. 

Please keep in touch. Glad to know someone else is trying the antibiotic route.

Macmommy,
According to the info sheet provided with the Rifampin, it too can cause nausea, vomiting, and gastrointestinal problems. It seems to be 30% more effective when taken on an empty stomach, but can be taken with food if your body is not handling it well. I have been on the Rifampin and Clarithromycin for about 2.5 months now, and haven't noticed much yet. Not much either in the way of side effects except the Rifampin changes your urine color (almost a rust color).

I haven't had any nausea or vomiting, until 2 days ago, which was the first day I took my dose of Rifampin on an empty stomach (up until then I hadn't noticed that it should be taken on an empty stomach). I vomited 3 times at the mall :(

From what I understand , the clofazimine is the most potent of the 3, but it's not even available in Canada. It took more than 2 months for the government to approve it and have some shipped in. I believe that some docs are forgoing the clofazimine in favor of other anibiotics that haven't really been proven in anti-MAP because the clofazimine is so inaccessible and a big headache to all involved.

I have only been on Clofazimine for about 3 weeks and I think they say it can take 3-4 months so see some improvement. I would like to be taking all 3 for 4-6 months to give it a fair shot.

I think I'll be getting some VSL#3; though I hear it's very expensive . Is a prescription required? I have a probiotic here that I started taking yesterday , 5 billion active units per cap (better than nothing I guess). Dh is unemployed since Feb and I have been too sick to work for over a year so I may alternate days of VSL3 and the cheaper probiotic, if it's not covered.

I have noticed my stools getting runnier but that happens to me often when I'm on antibiotics. It's hard to really guage the D because I have a colostomy.

Be really careful with the Cipro. I was on it for 4 years and what I was not advised is that it really, really affects your metabolism of caffeine. Basically, your body has a really hard time metabolizing it so it builds up and up. Finally it can result in panic attacks and anxiety. I used to be a person that caffeine did not affect me in the least, now anything more than 1 cup coffee sends me over the edge. AND I have been off Cipro for a long time now.. it has permemtly altered my metabolism of caffeine.. thats the problem right... "nobody" is on cipro for 4 yrs or really long term so "they" have no clue what it can do long-term.

Also, the rifampin can really speed up the metabolism of other drugs you are taking, such that your doctor may even have to increase your dose of the other meds.. I have read clarithromycin is one of them..also painkillers. I have no idea if taking it at a different time of day than the other drugs would help or have no effect (since the rifampin would be built up in your system)

I hope you have much, much success using the anti-MAP therapy :)

sweetnakira said...
Very curious about this treatment. I have never heard of it. Is it just taking 3 different antibiotics? I live in NY, does anyone know if any doctors here heard of this treatment? Is there anyone from NY that is doing this treatment now?

Only Dr. Chamberlin in El Paso, TX. There was one Dr. in Orlando, but he has stopped seeing new patients. If your local GI is open to the treatments, Dr. Chamberlin will see you and begin the treatment. Our local GI was open and has continued the treatments for our son who is now 12 years with Crohns.

Not exactly, Dr. Chamberlin wanted him to go off the antibiotics for at least a year and then go back on... he thought every other month. My son said, no way, it takes at least 2 weeks to adjust to the antibiotics to go off and on every other month, so he will go on for a full year. He was having some nausea and stomach pain, but his labs were normal and it turns out he had stopped taking Prevacid (he has gastritis) which probably explains the nausea and pain. We are thrilled, just wish more GI's would support this new treatment.

Pray you adjust to the Rifampin quickly, can't imagine suffering the side effects like you do!

sweetnakira said...
Very curious about this treatment. I have never heard of it. Is it just taking 3 different antibiotics? I live in NY, does anyone know if any doctors here heard of this treatment? Is there anyone from NY that is doing this treatment now?

 Hi Sweetnakira u really have your hands full its no wonder the meds r not responding 2 your body,cause u r likely worn out I bow 2 u mommy u r amazing the work of 8 kids and 5 children at home when do u ever get some time 2 rest your body,if your tired through the day is there a family member or close friend that can come in so u can lay down even 2 rest your body if u don't need a nap...I have had Chrones disease now for 23 years with numerous surgeries and I just turned 36 its been a long road @ this point I have never heard of this 3 different antibiotics treatments either I'm from Nova Scotia and we don't get many new meds until they r screened 4 at least 10 years in the US,,,I have tried many trail study's 2 no avail,,,Now I just got out of hospital after a 6 month stint but I got home 4 christmas there all heart I didn't wanna come back,,but I knew I had 2 my problem was I keep on having repeated bowel obstructions due 2 the many narrowings in the bowel from 2 many surgeries,,,I found a doctor a surgeon that would operate on me cause all the local doc's said no I wouldn't last long cause I already had SBS and there wasn't enough bowel left 4 a colostomy bag so I travelled 2 the surgeon and left my faith in his and gods hands I woke in severe pain cause the PCP couldn't get my pain under control,,slowing I began eatting soft food cause for months I had TPN and an NG so I couldn't eat plus my bowel was blocked so I wasn't hungery but isn't that when we want 2 eat when we can't lol,,,,Now I weigh 83 pounds soak and wet no energy tired all the time and in so much pain with the severe vomiting and diahrea it sucks I go back 2 the city 2 c the surgeon next Thursday 2 get a feeding tube put in if they can I had 3 my whole life in my belly but I had a triple hernia repair and there not sure if they can get through the mesh if not I'll get another port only on the left side cause I still got the blood clot on the right it never rains but it pours,,,,I don't want 2 start with the NG feeding tube cause I hate it but if I don't I will b back in the hospital soon and I can't do that again....So sorry 4 venting but if this cottail works I wanna know about it to so if u hear anything could u please let me know...Take Care Of Yourself And Your Family And Rest 4 God Sake....~Jen~

Thanks for the link! I appreciate the tone of the site, which seems to be about truly trying to find an answer, rather than sticking to an ideology.

My daughter is on LDN, but that doesn't mean she's going to try every alternative med out there. LDN was tried mainly because it seemed safe. Every antibiotic can cause side effects, so the effect of any three different antiobiotics, given at the same time, is not particularly safe for all the organs of the body.

For patients who have tried everything else, and are seriously ill, then it makes sense to consider anti-MAP therapy, and I sincerely hope it works. But for my daughter, whose Crohn's is under control, and who has not yet tried the stronger conventional meds, I have come to believe that anti-MAP therapy is just as dangerous as azathioprine.

The reason I'm pointing out the above is only to put the anti-MAP discussion in perspective - I don't want "newbies" to HW to be misled into thinking this is a safe therapy.  That said, I'll continue to follow developments in anti-MAP with interest, and am grateful you are sharing your experiences with it so that we can all make better decisions.

Btw, Cipro has not been studied routinely in anti-MAP trials, and I'm not a fan of this med. Because it can rupture tendons, Cipro was ordered by the FDA to carry a black box warning. In my daughter, Cipro via IV in the hospital caused fevers up to 103.8 Farenheit. (Which could have gone even higher, had I not been battling with wet towels, etc.) At the time I joined HW, the Cipro/Flagyl combo was in vogue for treating Crohn's, but has since dropped in popularity as first-line treatment, due to the lack of compelling evidence for its efficacy, in both Europe and the US. 

LDN stands for "low dose naltrexone." A clinical trial conducted by Dr. Jill Smith of Penn State showed LDN might be effective in treating Crohn's. The results of the second clinical trial of LDN are not yet available.

Because naltrexone has been around a long time, and well studied, its side effects are known. It was used at 50 mg to treat alcoholism. At that much higher dosage, it did pose some issues in terms of side effects - the most dangerous (but rare) side effect was liver damage.

At the substantially lower dose of 4.5 mg of naltrexone used to treat Crohn's, naltrexone does not pose any serious risk.