posted
I have a nasty case of microscopic colitis that will not go away. I had c.diff in January, and I have been in pain (cramping, gas pains, diarrhea, nausea) ever since. I had a flare up in April and since then my entire colon hurts and feels like a ball of gas, the cramping is the worst. I have been put on Pentasa, then Pamine for cramping, then Entocort which did nothing, now I am on Asacol and seem to have even more gas pains. I am avoiding dairy and wheat, and taking probiotics. I havent had any antibiotics since January except Flagyl/Vancomycin. Lyme wise I am doing great!
The microscopic colitis was found on colonoscopy, and all my latest c.diff tests are negative. The GI doc saw no signs of c.diff in my colon either.
posted
Oh My! I was getting ready to post a similar question -- I am really quite desperate with my colitis problem-- I had a colonoscopy in February that showed bacterial lesions throughout -- definitely not c. diff -- I was not being treated for Lyme at the time (had not been for 7 years -- was unaware of late disseminated stuff)-- all tests results showed negative for normal stuff -- that is when lightbulb went off for me regarding my Lyme infection -- other symptoms were also happening that I was ignoring ...
Anyway, I have not had any relief from going to bathroom, lost 40 lbs in 4 months and LLMD's are slow going because of it -- don't know if oral meds are helping due to "malabsorption" --
Look up info that Dr. Martin Fried researched regarding children and GI Manifestations of Lyme -- talks of "Crohn's disease" that was shown to be actually Lyme lesions. I think you can find it on this site link -- (I have taken my kids to see him in NJ, he's not willing to do much for congenital Lyme even though he researched and understands Lyme clinically)
Maybe, your GI doctor will be open to reading this -- mine isn't -- doesn't see connection of GI and Lyme.
I am frustrated b/c the high doses of Flagyl that original GI doc gave me brought out all kinds of neuro stuff and loads of other symptoms from years ago. Now I am a mess cognitively and physically.
It seems that opening up the cysts in my colon without another antibiotic combined caused me more problems --
Has anyone found a combination that actually works to clear the infection from the bowel --
This is not diarrhea from abx -- I had the frequent BM's with undigested food before ever given abx.
I have been on colazal for past two weeks along with Zith and Flagyl again and it is getting worse -- anyone having these issues?
Posts: 22 | From mount laurel, NJ | Registered: Jun 2005
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Someone e-mailed this to me recently, and I don't know if it's related but appahrently there is a mutated strain of C defficile:
CLOSTRIDIUM DIFFICILE, INCREASED VIRULENCE - UK (ENGLAND) ********************************************************* A ProMED-mail post
ProMED-mail is a program of the International Society for Infectious Diseases
Date: Mon 6 Jun 2005 From: ProMED-mail Source: The Guardian [edited]
--------------------------------------------------------- A new strain of a hospital-acquired infection has claimed 12 lives at the specialist Stoke Mandeville Hospital in Buckinghamshire, and infected more than 300, the Department of Health confirmed last night, 5 Jun 2005.
The outbreak of the bug, _Clostridium difficile_, dates from 2003. It causes diarrhea in patients and has been added to the department's mandatory surveillance system, which also scrutinizes the development of the so-called hospital "superbug" MRSA
A health department spokeswoman stressed the infection is not the same as MRSA and is not considered a "superbug." However, she said the NHS has been supplying specific advice to hospitals on how to deal with the bug since 1994. The victims of the outbreak at the world famous spinal injuries hospital at Stoke Mandeville have been affected by a new strain of the bacteria which 1st appeared there in 2003. The news comes amid rising concern over the growth in hospital-acquired infections and the possibility of a government crackdown on the hygiene of interaction between patients, clinical staff and visitors.
"_Clostridium difficile_ causes a hospital-acquired diarrhea that we have known about for some time. It is not a new phenomenon," a health department spokeswoman said. "There is a particular new strain which has affected patients at Stoke Mandeville which is still very rare in the UK as a whole. We are continually updating our guidance on this to the NHS. I would like to stress that most people who do contract _Clostridium difficile_ do make a full recovery."
The Health Protection Agency has issued guidelines which include staff using disposable gloves at all times when in contact with patients. But incidences of _Clostridium difficile_ have risen quickly in England, Wales and Northern Ireland from 10 000 a year in 1995 to more than 40 000 in 2004.
[Byline: Rob Booth]
-- ProMED-mail
[The report does not state over what period of time the cases occurred. It is possible that the organism present there is the so-called toxinotype III strain, which is thought to be of increased virulence and has been described this year (2005) in North America. The toxinotype III strain produces 16 times more toxin A and 20 times more toxin B in vitro compared with 13 variations of the toxinotype 0 strain commonly found.
Genetic analysis of the type III strain revealed deletion of the tcdC gene, believed to be a negative regulator [depressor] of toxin production that is normally expressed during the log phase of replication [when bacterial multiplication increases exponentially]. Toxin production during the log phase rather than the stationary phase was consistent with this finding. - Mod.LL]
[This message has been edited by Mo (edited 09 June 2005).]
Posts: 8337 | From the other shore | Registered: Jul 2002
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
what a misery. If it's not one damn thing, it's another.
After tx for c. dif /h pylori tx we still had stomach/gut problems, including barretts esophagus, and inflammation, polyps, and lesions in the colon. For us, massive doses of freeze-dried garlic and sacchromyces boulardi, prilosec, and probiotics got rid of the problem, but it took a good 6 months to really turn the tide. I think the SB was absolutely critical in healing the membranous tissue.
posted
Thank you! I am taking the sacc. boulardi and probiotics, & garlic. I just hope it starts to calm down soon. I think I'd rather have a broken leg, or amputate my arm that be stuck with this, all of this, Lyme included. Chins up, of course! Colitis is really painful, and even when the diarrhea stops, the cramping continues, and makes you tired too. UGh!
posted
I was taking sacchomyces boulardi -- but without antibiotics -- now am back on antibiotics (flagyl again and zithromax) and I-flora and other digestiv enzymes -- but have had worsening of diarrhea -- minocuat, did you have a second scope to see if lesions were still there? the 6 months you refer to -- were you on antibiotics then in addition to the other supplements? How did you eat? you can email me direct I am so struggling to eat no dairy, no sugar, no yeast b/c of the fact that I am going to bathroom all day and losing so much weight -- can't afford to keep at this pace -- afraid new LLMD is treating mine as a diarrhea from abx case and not the other way around -- malabsorption 1st due to the Bb lesions -- haven't even had the time or wherewithal to follow up on the upper endoscopy for those pains -- don't really want to know -- just want something that works and I can follow. thanks for reply
Posts: 22 | From mount laurel, NJ | Registered: Jun 2005
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posted
The garlic is an oxidant and as such would promote inflammation(?). After stopping the garlic, and continuing with the gut-healing measures for the timeline you and your doc have for this, then there should be some definitive resolve. I think that garlic's oxidant, and perhaps other properties would confound assessment of results. IMO Its a paradox of garlic? (Rhet.Ques.)
[This message has been edited by pq (edited 10 June 2005).]
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Yes, we did the upscope and the downscope to check progress on the colon and the esophagus.
The hubby had the worst time of it; his gut was a dreadful mess. But he went from having many polyps and a massively inflamed esophagus and colon to having no polyps and some very small spots of minor inflammation in the colon and esophagus (a year ago). The entire process of healing took about 3 years, but he had major relief from gut problems within 6 months of starting the protocol I mentioned above.
And yes, he was off pharmaceutical abx completely at the time, doing Dr. Zhang's protocol for 8 mo. Didn't do much for the LD, babs or bart, but massively helped his gut. Being off abx was part of it; I think the garlic cleared up lingering yeast problems and possibly other gut pathogen problems, although he'd been on a lot of probiotics and some antifungals at the time; and the SB healed the membrane, or so I speculate. Possibly the other herbs helped in some way, but (gut healing) progress continued after we quit all but the prilosec, garlic and the SB. Dunno exactly.
Whether the garlic would cause problems for someone else, I don't know. In our case it was immensely helpful.
He had to go back on abx for LD/Co, but has not had significant gut problems since then, although Mepron did cause some diarrhea.
ssucho, I am worried about your diarrhea too, not only because of the severe weight loss and issue of absorbing nutrients, but because I don't see how you can be absorbing the abx properly with your gut being so damanged. We've found some work arounds to slow the diarrhea when it hasn't been too awful, like taking lots of citrucel. But can you talk to your doc about maybe doing IM abx for a while until your gut heals?
We didn't find much that helped in terms of diet after the stomach/gut got really bad. We either had gastroparesis, and entire meals would get upchucked 24 hours after eating them, or diarrhea and everything would run through. It hurt to eat. It hurt not to eat. It hurt to go to the bathroom. My skin looked terrible and my hair started coming out.
One thing that I could manage well on was a yogurt protein smoothie with that I thickened with metamucil. Yummy, huh. I put blueberries in mine, but no other sweetener. But it comforted my stomach and seemed to get absorbed.
posted
one more time -- 4 tries with this password and I wrote tons -- Minuocat, thanks for reply -- how did your GI doc work with your alternative treatment?
My new GI (we just moved here after Lyme crash happened after first colonoscopy in February) is a total sceptic on Lyme -- afraid to call and ask to change medicines b/c of new lyme treatment -- did not schedule colonoscopy like he wanted to see "if lesions wer still there" even tho my symptoms have not improved.
thanks for reply -- need help and am straddling b/t GI and LLMD and they both contradict on so many points -- I have gone w/o abx for time,with no relief and now it seems like worsening on orals.....
have Bicillin CR in fridge from LLMD, have heard that is not the best version of the IM stuff -- but they are going to try it at my next visit in 10 days. in the meantime, worried about dehydration -- since I am going no sugar, no carbs, no yeast, it is hard to keep hydrated -- previous GI dr. said water will not do the trick when going to bathroom so much.....
thanks for guidance... need GI doctor's help I think even if I try to work with supplements --
Susan
Posts: 22 | From mount laurel, NJ | Registered: Jun 2005
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WildCondor
Unregistered
posted
Has anyone tried Pentasa or Asacol? I was on pentasa for 4 weeks, switched to Asacol, now in my 2nd week and the cramping and pain and diarrhea remain. They say it takes a long time to start working, joy.
Dr. Kenneth Fine (found info online)says regular pepto bismol can be effective for this. I may try that next. Ugh
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