Rifaximin - Miracle Crohn's Drug!?

[AvsGuitarist]

It's been a long time since I've posted on the board but I'd like to give an update. Dunno if anyone cares but it might help someone who was desperate like me. I am in no way advertising anything here. Just want to tell my success story. It's a long read but a decent one for anyone who doesn't want to take the conventional meds that have risk of cancer, and kill your immune system.

I have been going to an Osteopath, Dr. Juetersanke, for the past 6 months and have made HUGE strides since then. He specializes in the "hard to treat patient" and I would definitely classify myself in that category as I have tried a number of conventional medications like immuran, remicade, steroids, etc. and none of it worked, in fact The list goes on and on.

Anyway I started off with a number of things. First off he told me for anything to work I had to commit to the Specific Carbohydrate Diet. I agreed and have been religious about it since July 2009. Then he recommended trying LDN and VSL#3. The VSL helped a little but it was expensive so I tried a different route. (I stayed on the LDN and am still on it but I'm honestly not sure it's helping much. Hard to tell.)

After that we tried standard antibiotics like Flagyl and Cipro and those affected me very negatively so we ruled that out. He then put me on a course of Fluconazole (for Candidia infections - common in Crohn's patients) which also seemed to help make some progress. I was also put on a heavy course of 300mL B12 shots (self-injected in the thigh). 30 shots for 30 days, 15 for 30 days, and down to 1 shot per week which is what I'm doing now.

So here's where we get to the important part. After all this I was feeling better but I knew I wasn't in remission. One of the last things he said he wanted to try was an antibiotic called Rifaximin AKA Xifaxan (3 to 6 a day, I took 3). He explained to me that it goes right through the GI tract and does not get ingested. It kills off all the bacteria in the GI (which works with the theory that Crohn's is a bacterial infection and your body attacks the bacteria on the intestinal wall resulting in the auto-immune). He recommended I do the Rifaximin in conjunction with the Fluconazole to prevent any Candidia infections.

Now with this medication I knew I had to take a probiotic. On the SCD I make my own Yogurt with a Yogourmet Yogurt Maker with a starter from GIProHealth.com which has the 3 strains of bacteria that are good for the GI. (I'm not advertising, just informing of what works well.) I made sure I consumed a LOT of the Yogurt while on the Rifaximin. After 1 treatment I felt way better. My stools were getting solid, my energy level was up, I was less irritable, life looked way better. I then waited 2 weeks for the dust to settle and I felt good but like I needed one more treatment. I put myself on another 10 day dose and I have never felt better. My immune system is strong, I don't remember the last time I caught the flu or cold, even my Asthma is improving! I dropped my Advair from 250/50 to 100/50 and am on the verge of taking myself off it completely!

All in all the SCD Diet + SCD Yogurt + Rifaximin + Fluconazole (to prevent yeast infection from the antibiotic) worked like MAGIC for me.

Here is a website I stumbled across that has a bit of info for anyone that is interested in this:

http://beatingcrohns.blogspot.com/2009/09/rifaximin-xifaxan-antibiotic-used-to.html

I honestly hope it helps someone else as much as it has helped me!

Cheers!
Andrew

 

[imisspopcorn]

Thanks for the info....It's an Orphan drug, was it hard to get?? How much did it cost. It's interesting that it was used to treat travelers diarrhea. Great news, you are so lucky to be feeling better.

 

[AvsGuitarist]

Thanks popcorn! I thought that was interesting too. It kills off ALL of the bacteria in the gut - good and bad - so that I could replenish it with all GOOD!

It was easy to get. My doc just wrote me a standard prescription and I was able to fill it at my local Walgreens.

I know it's an expensive one though. For 60 pills it was $40. I'm not sure how much my insurance covered.

 

[Mazen]

I posted before on some studies about this antibiotic and Crohn's. The results were inconclusive, but it did help some patients. Great to hear it worked for you

 

[Crohn's 35]

Well I just got a study of Crohn's disease and VSL#3 and they study proves post operative surgeries have less recurrence than Mesalazine, (Pentasa, ASAcol). Since I am on Entocort, Pentasa, I just got my new shippment of VSL#3 cause I wanted to see if it was working or not and have been suffering since, so I am going back on it, and gonna ask the doc for Rifaximin, did enough reading on it and I want to try it before he puts me on Prednisone..

Has anyone else tried Rifaximin??? Would appreciate some insight!

 

[saidinstouch]

I did it in early december and had just over a month of relief until the last couple days. I might see if my doctor will give me another course after my colonoscopy on Tuesday and then follow up with vsl#3.

 

[Nancy Lee]

This is something I am going to ask my GI doctor about next visit.
Thanks so much for coming back in with the update!!

 

[braveheart]

I had been on Rifaximin for a couple of years and It worked well.

After some time It stopped working and I went back to Flagyl.
I understand the body gets used to the drugs we take and we have to switch treatments. In special antibiotics are thought to kill bacteria, and in the long run, you get bacteria that resist to the specific antibiotic and so that you have to change.

Rifaximin is a very good choice when you need to stay on antibiotics for long terms.
It has very low side effects.

http://en.wikipedia.org/wiki/Rifaximin

 

[wqcoleman]

again, I think it's important to STRESS! - she was on SCD and then took the medication. I don't believe this would even remotely work if she did not do the SCD diet first and then use the antibiotic.. I've read a ton on this as well, and many know I'm an SCD fanatic on this board, so it's great to see another person have success after so many failed drug concoctions.

I was the same.. and now I'm feeling great again too -- on Humira and Prednisone, but I often wonder if it's the diet that has caused conditions for the drugs to work, and I truely believe this... I can't wait for the day that I no longer need any drugs and that the diet works on it's own.

So glad you posted this.. it again reinforces my belief that this is all food/diet related...

 

[GKLOR]

I used Rifaxamin for about a 1.5 years. It seemed to stop working. I switched to Cipro, which worked really well, but I developed the rare complication of inflamed tendons. So, I went back to the Rifaxamin and it has been working again for over a year. I am totally convinced there is a bacterial basis to the disease. Rifaxamin is expensive - over $1000 for a month;y supply. I did get insurance to cover it for two years after appealing. I hope it continues to work as I just don't want to go on the immunosuppressives. There is a lot of research going in with this drug if you google it. I also take Pentasa and an otc probiotic and drink lots of probiotic yogurt.

 

[CrohnsDaddy]

For some of us, it appears that Crohns can be triggered by having *any* bacteria in the gut: good or bad.

I've tried all the "good" bacterial supplements with rather nasty results.

But recently, I had fantastic results from taking a supplemental yeast, S. Boulardi, while taking Clindamycin and Flagyl at the same time.

S. Boulardi is considered a "good" yeast. It isn't one of the strains that gives "yeast infections", and has been used for hundreds of years to treat symptoms of D. You might want to do a Google search on S. Boulardi, and read up a bit. It has been shown in several studies to be an effective anti-inflammatory.

I had a substantial decrease in Crohn's symptoms just by adding the yeast to my regular meds.

But throwing in the combination of Clindamycin/Flagyl (resulting in a darn near bacteria free gut) put me in the first *complete* remission I've had in my adult life.

For me, at least, it appears that any bacteria in the gut throws my immune system in to complete overdrive, with all the wonderful Crohn's symptoms to go along with it.

 

[JohnnyRottenAppleseed]

*bump*

i ordered a boat load of Xifaxin from AllDayChemist and will try it this week after i hand in my poo sample to test for bacteria and parasites. Good Times.

 

[Alanschachter]

Any updates on your rifaximin experience?

 

[JohnnyRottenAppleseed]

So i did 4 days of Rifaximin and then quit because I was soooo sick for the preceding 2 months. Blood and mucous ten times a day. Eating one meal a day. The Rifaximin took away all bloating but i was still bleeding a lot.

My doctor put me on Cipro and Flagyl at 500mg x2 day for Ten Days. 3 days later i was crapping out solid logs. By the end of the antibiotics cocktail i was symptom free. I am still symptom free! I haven't been on the boards because i was enjoying being "Not Sick" for the first time in months. I'm super pissed at my Gastroenteroligists who were pushing that Humira Snake Oil poision and treating me with steroids and Imuran which gave me softball sized Abscesses and about 20 extra visits to the doctor annually for infections that have not recurred since i took myself off Imuran in November against doctors orders.

I will post my story in a seperate threat as I'm curious as to why I have been free of Crohn's symptoms for 4 weeks now after merely taking antibiotics. I have had 3 seperate well respected doctors do colonoscopies and diagnosed me with Colitis twice then finally Crohns. Now i'm healthy again. WTF??????????????