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Combo Antibiotic treatment - PART II

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Posted 8/16/2011 6:44 AM (GMT 0)
Still continuing to improve, even as I taper off my last little bit of steroids (enema). Down to 2 BMs today. First one when I got up around 8 am, and one just now (11:30 pm) as I prepare to go to bed.

Able to go about my day today as a normal, healthy person. Rectum feels ever so slightly "tender" at times when having a BM or passing gas, but not surprising after having fairly severe inflammation and swelling of the rectum for over a year. Other than that, no noticeable U.C. symptoms of any kind.

Thanks to DiaperMan for starting this thread!

$30 worth of antibiotics seems like a steal compared to Camel's milk @ $12/day! I do understand that trying any treatment is a very personal decision and I would never push a treatment on anyone. All I can do is relate my experiences as I try different options.
Posted 8/17/2011 5:33 PM (GMT 0)
It's 2 months now after I have completed the antibiotic therapy and I am symptom free.

My doctor thinks that my symptoms will reapear. I don't think doctors really understand IBD. They simply refuse to accepted that bacterial infection could be the cause of many peoples UC
Posted 8/17/2011 6:54 PM (GMT 0)

mudua said...


My doctor thinks that my symptoms will reapear.

Wow, what a party pooper. He/She is just talking out of his/her tailpipe, because triple antibiotic therapy is fairly new, and no one knows the long term outcomes of people who have gotten into remission with it.

With FT, which I think is similar in how it works, Dr. Barody reported that none of the 6 people who were cured with it in his original study have had any further problems, even after a decade or longer.
Posted 8/17/2011 7:13 PM (GMT 0)
I hope you guys are right but I have my doubts. I went into remission after antibiotics 17 months ago. Now it's one or two solid BMs a day, no urgency, formed almost like a work of art. But I still get symptoms when eating something bad and I have to cease the bad stuff and supplement with psyllium seed and VSL3 to quickly get back normal again. So I think if I lift my guard I will once more find myself in flarestown.

I think IBD is like alcoholism. You can abuse alcohol for years before actually becoming an alcoholic. But no matter how long you stay away from alcohol, all it takes is one drink to fall down the slippery slope all over again.

Maybe FTs are different. And maybe you guys are different since you used 3 different antibiotics while I only took Flagyl. Maybe I still have subliminal infection that can be controlled with diet. At any rate I am happy where I am now compared to the agony of my last flare. Remission is precious and needs to be continually nurtured, so I would rather not taunt the universe by abusing my diet again.
Posted 8/17/2011 11:55 PM (GMT 0)
Mudua, you said you take bicarbonate of soda and thats not the same thing as baking soda which is sodium bicarbonate right? I have been to two grocery stores and neither have it where did you get it?
Posted 8/18/2011 4:44 AM (GMT 0)
Hi DanthaMAN

The chemical compound for bicarbonate of soda is (NaHCO3). It is also known as

Baking soda
Sodium bicarbonate
Bicarbonate of Soda
Sodium bicarb
Bicarb


Baking powder however is not th same as baking soda
Posted 8/27/2011 11:02 AM (GMT 0)
 

Any update on this wonderful thread?

C G K, mudua, others who have completed the combo treatmet?

Bleda - UC

Posted 8/27/2011 5:21 PM (GMT 0)
Hi Bleda

It's now 2 months since I have completed the combo antibiotic therapy and I feel as if I am cured. I have one bowel movement a day with no urgencies

I have been suffering with UC for the past 17 years and I have been on many different medications and I taken taken many supplement without much success.

 

Posted 8/27/2011 7:45 PM (GMT 0)
its wasnt the cure all that I was hoping for like Mudua but I did see my symptoms get better after stopping it. However my bms now smell teribad.
Posted 8/27/2011 10:06 PM (GMT 0)
The antibiotic combo therapy has totally changed my life, at least for now! Of course, when you have U.C., you are always worried that your symptoms will come back.

I continued to improve for the weeks following the ABX treatment, but have settled in to about 3 BMs a day, sometimes 2. I take a lot of fibre, so tend to have fairly bulky BMs.

I have one BM in the morning and then can function normally for the whole day. I have a BM in the afternoon most days, but with no urgency, then another one at bedtime. I used to have to do a morning mesalamine enema after getting up, which would mess up my day, but I don't need it anymore. The only meds I'm on is 12 salofalk tabs and a hydrocortisone enema every second night, which I plan to taper to every third night in about another week.

I am able to work a lot more and have been making more money! I used to have to wait until the afternoon to book appointments which was very limiting.

My rectum and lower sigmoid were pretty messed up after flaring for over a year, so hopefully things will get even better (maybe just 1 BM per day?) if things have more time to heal. I have been off the antibiotics for a little under 4 weeks.

DanThaMan,

Are you taking probiotics? I am still eating raw sauerkraut and taking VSL#3 every day to try to keep the flora in balance.
Posted 8/29/2011 6:19 AM (GMT 0)
Brilliant news CGK :-)
Posted 8/29/2011 10:15 AM (GMT 0)
 

Thanks for all replies.. Great and encouragıng news... I am planning to start this as well..

Any idea/theory about why people improve after 3 months?

The article even says people got better at 12th month.. Am I wrong or missing something?

Regards..

Belda..

Posted 8/29/2011 3:22 PM (GMT 0)
I do sacro boulardii for a probiotic. I did recently add a vegan B-Complex to my regime and maybe that could be doing it.
Posted 8/30/2011 5:35 AM (GMT 0)

Bleda said...


Any idea/theory about why people improve after 3 months?

The article even says people got better at 12th month.. Am I wrong or missing something?

It can take months for a badly inflamed colon to heal once the source of the inflammation is removed. Also, it can take months for the flora in you guts to regrow to normal levels after taking antibiotics.

From what I have read, many (most?) people with U.C. have genetic mutations that affect their immune system and their immune response to pathogenic bacteria in the colon. Some have a broken feedback loop that fails to shut off the immune response even when cause of the inflammation is removed. Another common mutation affects the lining of the colon, where the cells have trouble binding together normally (leaky gut) making the lining of the colon overly permeable. I think these and other factors make our response to treatment hit or miss.
Posted 9/1/2011 4:21 AM (GMT 0)
First time poster. I have been looking for information on the regimen my doctor started me on and came across this thread. I've had progressively worse UC over the past year after being very healthy my whole life (50s). The past year has been horrible and was getting worse despite increasing levels of Lialda, Lomotil, and Gas-X. New Doc finally took a new scope look and was amazed how much worse things were than the initial scope pictures had been. He put me on Cipro, Flagyl, and prednisone. After reading the drug labels I was quite concerned but gave it a go. Within a couple of days, the gas subsided, then the blood and mucous reduced. After a week I was confident enough to go out fishing (4-6 hours in a small boat with only on open air porta-pot). A few more days and I was down to 2-3 BMs per day and somewhat controlled in when I do them. Just finished the Flagyl today but BMs are starting to have a little form to them and I feel very much in control. When I eat, I don't need to be within 1 minute of a toilet. What a relief. I am still taking the Lialda and Lomotil and not sure if it will be safe to stop them....I hope so before I need to start next year's medical deductible....that stuff is EXPENSIVE. The prednisone tapers off over 3 months.

For me this combo therapy worked fast and thoroughly, I've never had a "remission" until now and I am hoping this is actually a cure.

I have found that I get much more and better information from sites such as this than my doctor provides. It is good to hear you're not alone and hear others describe the same things I have...it even helps me to explain to my doctor since I never had terms to describe the mess coming out of me, but I see what others write and think....yeah, that describes it well.
Posted 9/1/2011 4:55 AM (GMT 0)
BBix,

Glad to hear you had success with antibiotics. Most of us here took a triple combo, flagyl, amoxicillin and tetracycline based on a study out of Japan which proved the effectiveness. I've heard other GI's prescribing flagyl and cipro as a combo, but I've never seen any studies on that.

In any case, it seems to have worked for you. Keep us posted as to how things go from here.
Posted 9/23/2011 9:52 PM (GMT 0)
Haven't heard a peep about anyone trying the antibiotic combo lately. Thought I would give an update.

In about a week, it will be 2 months since I finished the triple ABX therapy. Still feeling great. averaging 2 to 3 BMs a day. Usually I have a BM in the morning, then another just before bed.

The only symptom I have left that could be U.C. related is I still have what I would consider excess gas. Nothing really bad, but just more than a "normal" person, I'm sure.

A couple of weird things. I seem to be sleeping better, and I have vivid dreams almost every night. This was a rarity before, right since the time I was first diagnosed with U.C. Perhaps that is a result of sleeping more deeply with fewer interruptions?0

The other weird thing is hair is regrowing on my legs and chest. Seemed to really thin out before. No problem since I am a man!

As for meds, I am taking 12 salofalk tabs/day. For rectals, I am continuing to taper off the colocort, now doing one every third night, and SFRowasa on the nights when I am not doing a colocort. I'm not sure if I really need the meslamine enemas, but am focused on tapering the steroid enemas, and will taper the mesalamine ones at some point in the future.

I thought for sure I would be looking at remicade or surgery, but the antibiotics have gotten me into a fantastic remission, and almost completely off steroids. Life is good at the moment!!
Posted 9/23/2011 11:01 PM (GMT 0)
BBpix, thanks for sharing your story. Are you still on prednisone? Many of us do well when we start prednisone but have trouble when we taper down to a low dose or when we get off. Some don't have a problem at all and have a long remission from prednisone. Hopefully you're one of those people. I would like to keep this thread active, I think we have seen a good response to the antibiotic combo.

It's wonderful that you've been doing so well CGK. I have been having vivid dreams lately too. I think mine is due to 6mp.
Posted 9/26/2011 1:44 PM (GMT 0)
Hi, The combo didn't work for me and now i'm on Prednisone. It will be 3 weeks total on Weds night. I started at 40mg for two weeks and now I'm doing 30mg. My doc wants me on for a long time. SHe said in 6 weeks I should be in remission. I'm also taking 4 sulfasulzine total a day and canasa. I feel ok. Major night sweats just around my neck pretty much every other night. I hope it works. I feel slightly improved. I'm so happy for those that the combo treatment worked for! So my UC might not be viral or bacterial it just maybe my immune system.
Posted 10/18/2011 7:10 AM (GMT 0)
Just a quick update. My doc mentioned that if I was doing well at 1 steroid enema every third night, it would be safe to just stop them altogether as the next step. It's been a week since I did my last steroid enema and I am doing great! No U.C. symptoms to speak of. I've continued to improve gradually since finishing the antibiotics about two and a half months ago. The last thing to improve is I now have a lot less gas. That was the last U.C. related symptom to clear up.

I can't believe the antibiotic therapy was able to get me into total remission and break my dependence on steroids, but it did. Life is great now that I don't have to worry about my U.C. at all. The longer and uglier the flare, the more you appreciate getting into remission and being symptom free.
Posted 10/19/2011 2:31 PM (GMT 0)
GOD Bless YOU! I'm so glad it worked for you! Don't forget us, encouage others to try this, I believe in this before surgery!
Posted 10/19/2011 4:56 PM (GMT 0)
It's now 4 months after completing the antibiotic therapy and I am still symtom free.

Posted 10/19/2011 6:44 PM (GMT 0)
OMG that's so awesome too! I hope people try this before other means like having their colons removed. I believe it did help me, but it was a cure all in any means. I'm glad I ruled out a bacterial and parasite infection. Now I'm on Pred and I like it so far. I'm still in a flare I think, since I have urgency but the blood is a ton less!
Posted 12/7/2011 11:15 PM (GMT 0)
Hi all, this is my first post here, I'm from Mexico and I was diagnosted with UC 2 years ago. at the beginning I had to go 8-10 times per day to the toilet, my GI gave me prednisona and salofalk and I went into remision almost immediately but when I started to lower the prednisona dosage my sympthoms came back. My GI told me I was steroid-dependant and gave me imuran (march of this year) but exactly that day I found some articles about transfer factors (made from human blood and injected, not the tipical and commercial pills) and I give them a try. Might be a placebo effect or whatever but it helped me a lot, I don't know if I'm into remission, I only go to the toilet 1 or 2 times per day, some gas and my BM are well formed but very thin (a thumb diameter). next monday I have my colonoscopy (I've had 3, but the doctor haven't be able to see the length of my affected colon because of the inflamation, I hope this time they be able to see the affected part).
Right now I'm taking 9 pills of salofalk and 2 supossitories per day, and once a month one injection of Transfer Factor. also began to eat yogurth that I make at home (fermented 24 hours)
Personally I'm very optimistic about this antibiotic therapy, but right now I wouldn't like to try it because I think I'm ok and this therapy will affect the balance of bacteria in my colon. Anyway I'll ask to my GI next monday and if in future things get worst I'll give a chance and will try with this. Thank you all and keep posting, this gaves a lot of hope to all of us!
Posted 12/22/2011 7:21 PM (GMT 0)
Another update. I've been completely off steroids for almost 3 months now. There were a few bumps in the road as my body got used to producing its own cortisol. The main problem was brutal and unrelenting joint pain. My wife told me I looked like an old man, limping around, and practically needing a cane to get out of the car. The pain started to subside after about a month and a half. Now, I feel pretty much 100%. No joint pain, no urgency, 3 trips to potty, everything nicely formed. It's wonderful to be able to live my life as a normal healthy person.

The triple ABX combo therapy has been a miracle for me.

Hope you all are having an nice Christmas/Holiday break and all the best for the new year! Be happy and (hopefully) U.C. free!!
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