A few questions about antibiotics for UC

My GI says since I was feeling so good on the cipro/flagly antibiotic combo that maybe my UC is more bacterial related. I had no blood, my stool was better, not the best but at least it was not diarreah. No urgency.

Can this be? UC bacteria related? Like Hpylori causes gastric ulcers? Similar in a way.

Also she suggested one week of flagyl one month, then the next month a week of Cipro, then the next month back to one week of flagyl and keep alternating for 6 month. It will confuse the bacteria and hopefully it will be killed off.

Remember too, I have Lyme's disease and have seen a lyme literate doctor, who is all for antibiotics.

Would you do something like this if it helped your UC?

On the advice of an experienced GI doc, I probably would, especially since your UC has been so stubborn, and since you have a Lyme's disease issue.

I think you're in the "special" category with so many things going on at the same time.

Since you have Lyme's, it seems maybe that's a good thing for you.

I don't know what I'd do regarding antibiotics if it was one of the initial treatments, but I would probably have had my colon out long ago had I been in your situation.

Time will tell how it's done for you. 

Did you not have stool samples done before the treatment?

Great to hear you're doing better...a long needed break.
q

  me too!!

q

Hi INSOFL, I always thought my UC started by eating alfalfa sprouts I didn't wash. I became deathly ill that night, expelling from both ends violently. I should have gone to the hospital but I was convinced otherwise by my now EX. I should have listened to my body and my mind. I'm not putting blame on anyone but I wish he would have been in my corner more. It was months later I started to bleed. But then being DX with Lyme's too maybe all the different bacteria just erupted and thence I got UC.

I tried LDN, Humira, Imuran, 5-ASA's (all of them) Prednisone, all natural supplements, accupuncture you name it and none of these have even the type of relief I'm seeing from Cipro/Flagyl combo. Cipro on its own has been the best to me so far! Being off it now two weeks I'm feeling the UC symptoms again, little blood, urgency and more bathroom trips. I wasn't having any when I was on the antibiotics they were a GOD send! So I'm not sure what to think or really what to do.

What sparked this combo was back in November when I got back from Key West,Florida, I was having violent diarreah. It was not normal at all! I lost a ton of weight, it smelled like death, it was like someone ran water in my body after I ate. So I think I picked up something somewhere on vacation. I didn't do anything about it for three months, because I thought it was my UC but it slowly got worse and worse and worse. I just kept saying to myself and to my BF, this is not right, something is very wrong!! I was having "leaking" greenish/yellow stuff too. Now I can wear my workout pants with no worries of leakage spots!! I was wearing a pad every day and that brought on diaper rash! It was awful. Talk about losing any "sexiness" for a woman, wear a pad every day and have your butt leak! It sucks!
My local MD was so awesome, (although his lab screwed up my stool tests) he didn't want to wait and said let's just hit with this two antibiotics. I started Cipro first then added flagyl two days later. Withing 24 hours of starting Cirpro my body was like whewww, this is good and from there on I got better and better.

I did notice some side effects from Cipro though. Hip pain, like arthritis. Then the combo after 5 days I was getting upper back pain on the right. Kidneys maybe? I just have to watch out for the side effects and know when enough is enough. So it's not like I haven't tried other things and surgery is not an option for me. I feel I'm on the right road. I will be back on antibiotics on April 4th if I choose to. My doc has prescribe me diflucan for yeast issues and I ordered VSL3 to help me as well. Here's to healing!

Let us know how it goes.

When you say lyme can masquerade as IBD do you mean just symptoms or can it show up endoscopically as well??

I had lyme but no one ever mentioned it could cause IBD.

Hi Pathogenkiller, I was on antibiotics for two years from my lyme's the big ones for me were injections of Bicillion and Rocephine because orals tore up my gut.

My UC never got better doing any lyme protocol. I've done other orals as well besides cipro and flagyl.

Something happened when I went to Florida and came back with this vicious diarreah and this combo helped that.

I'm not being treated for lyme's as that is under control. No stiff neck, joints, real loss of energy any more.


Do you know what bands showed up for you for your lyme's? I had like four

Are you treating any yeast/candida that might from the antibiotics? My lyme's doc did, nystantin orals and liquid.

Yes I own under my skin I do believe. I made my Bf watch it so he understand my good days and bad days.

Ole,
Blasto and Lyme are such aholes. I'm sorry you had to deal with both. So, you got treated for blasto and then flagyl opened up some cysted pathogen/parasite...

So the Lyme, you saw the bite and were treated within 6 weeks? were you treated with at least 6weeks of abx? Which ones? You coulda just drove the Lyme somewhere else in your body and it started presenting as something else... Or maybe you did get the Lyme and babesia or Bartonella came along ... Or the infections might be opening you up to Map bacteria. It is very slow growing so if you had many month between abx and flare...

Such a multifaceted puzzle. But if your flares came after people finding known pathogens I'd explore that if you aren't in remission. What are your current symptoms?

Therearemiracles, awesome that you had longterm abx treatment! What else did they find when they found your Lyme? Yes, I hit the yeast first. I've been doing that for a year and a half with oil of oregano, gse, no sugar, candex, threelac.. I don't know what the doc will want me on during treatment.

Bands 23, which is BB specific and 39.

pathogen, did Igenix do your testing? They did mine. My bands were 18 31 41 89-93 this was in November 2009 I was negative for B Burgdorferi.

I tried

Doxy, omnicef, bicillian, zithormax, flagyl, rocephin, rifamphin, tindamax per my report from the doctor since '09 a lot of the orals I could not tolerate more than a week or two it would make my UC so much worse. Bicillian and Rocephin I did for about 6-8 weeks, a shot a week.

Okay, I skipped all of the Lyme discussion because I know less than nothing about that...

However to the original question -- cycling Flagyl and Cipro is the standard treatment for chronic pouchitis, so there are definitely people out there doing it, if not for UC exactly then for something very similar. I say go for it!

Be on the lookout for neuropathies from the Flagyl. It's probably much less likely since you'll be cycling on and off. I was on Flagyl for about two months straight because Flagyl and Cipro were the BEST treatments for my UC (better than pred), until I started developing neuropathy in my eye from the Flagyl. Neuropathy in hands and feet is more common but I'm sure you can appreciate that all three are serious. Luckily it almost always reverses if you catch it and discontinue Flagyl early. Mine has reversed, thank God.

Pathogen Killer

I'm "sort of" in remission. Mildly active disease. I've been hit by atleast 5 pathogens over 12+ years with U.C. Blasto 1999, a "mystery" c-diff like infection 2002-2005ish, Lyme 2008, a traveller's bug (lasted months) 2010, and Aeromonas 2012.

The lyme was treated right after the tick byte with 2 weeks Doxycycline.

The only thing that has gotten me to complete remission is Vancomycin for some reason. It was very strange. After a colonoscopy in 2004 I had a worsening of symptoms and got put on Vanco. No one explained exactly why. Perhaps some c-diff had been going around the hospital. But it worked like a charm. Symptoms returned after stopping. I went through 3 or 4 cycles of Vanco. Each time it worked. But eventually they wanted me stop out of fear of developing a vanco resistant infection.

Do you know of anything vanco would target?? C-diff was never detected just suspected based on the response to Vanco. Is being vanco-responsive a clue to something?? Would Blasto respond to Vanco?? That would be a real kicker, if it's actually been the blasto this whole (decade+) time.

Ole363 said...
Pathogen Killer

I'm "sort of" in remission. Mildly active disease. I've been hit by atleast 5 pathogens over 12+ years with U.C. Blasto 1999, a "mystery" c-diff like infection 2002-2005ish, Lyme 2008, a traveller's bug (lasted months) 2010, and Aeromonas 2012.

The lyme was treated right after the tick byte with 2 weeks Doxycycline.

The only thing that has gotten me to complete remission is Vancomycin for some reason. It was very strange. After a colonoscopy in 2004 I had a worsening of symptoms and got put on Vanco. No one explained exactly why. Perhaps some c-diff had been going around the hospital. But it worked like a charm. Symptoms returned after stopping. I went through 3 or 4 cycles of Vanco. Each time it worked. But eventually they wanted me stop out of fear of developing a vanco resistant infection.

Do you know of anything vanco would target?? C-diff was never detected just suspected based on the response to Vanco. Is being vanco-responsive a clue to something?? Would Blasto respond to Vanco?? That would be a real kicker, if it's actually been the blasto this whole (decade+) time.

Vanco is what my doc has mentioned to me we will be doing IVs of. Vanco vanquishes. It hits gram positive bacteria but has limited action on other things. I think there is a gap with Fungi and some protozoa (so candida can take over.. or if you are like me and think you have oomycota secondary zoospores of some type of psuedofungus you cant identify in your blood). Since Blasto is a protozoa, I honestly dont know..
http://www.badbugs.org/Blastocystis_hominis/bh_treatment2.htm

If they put you on vanco they thought you had something infectious. So did you do 6 week cycles IV? or what? I dont know how they use vanco yet because nobody uses it as they are "saving" it. Im sorry, but I think Lyme needs more then 2 weeks on doxy, especially on an immune system dealing with UC so just makes sure you keep it on your radar.

If I were you, Id really really try to find a Lyme Literate MD.