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VSL#3 warning

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Posted 8/10/2013 8:55 PM (GMT 0)
First of all, are you a real doc? Do you have a license to practice or still in medical school? I am curious because you referred to JAMA in one post.

That said, its a common sense (and book knowledge) to ramp up anything slowly, exceptions being some antibiotics. Now that you pushed 4 capsules of VSL#3, I am suspecting Herxheimer reaction. Your gut was mot likely loaded with pathogenic bacteria and this sudden rush of good bacteria caused chaos. Majority of the bad guys died and it led to serious die off reaction. This is a guess, you should have tested your stools right away.

Other possibility is, one or more strains in VSL#3 do not suit you and that caused havoc and now you have bleeding. Talk to your GI and see what he/she has to suggest.

I don't see any point in reporting to FDA (because they will point at you for overdosing) but do report it to VSL#3 makers using snail mail.
Posted 8/10/2013 8:58 PM (GMT 0)
DocGP,

if you have activated charcoal, take it. 2 capsules/3-4 times per day with a good amount of water. It will help to calm everything down and help with gas, cramps and diarrhea. It helped me. You know activated charcoal is used extensively for food poisoning all over the world.

Put warm heating pad on your belly to help with the pain and cramps. Some warm herbal tea like peppermint could help to soothe the belly too.

Posted 8/10/2013 10:26 PM (GMT 0)
Thanks, that's super helpful. I will try those things.
Fingers crossed!
Posted 8/11/2013 1:30 AM (GMT 0)
I sincerely hope you are doing better soon. Take care!
Posted 8/11/2013 10:57 AM (GMT 0)
Don't worry, i tried vsl about one week ago and had bleeding on the next day which i attributed to it. However, i took an advice of people on this forum and gave it (vsl) one more try when the bleeding stopped. I've been taking it again for 3 days now and everything is ok, no bleeding or bloating etc. so i guess it might have been a coincidence then or simply my organism has got used to it after several day break from any probiotics. So wait patiently and don't take any other probiotics meanwhile and things will get back to normal soon.
Posted 8/11/2013 11:44 AM (GMT 0)
Sorry you had such a bad reaction from the VSL, likely from overdosing on it.

Just wondering if you've been tested for stool bacteria, and c. diff?

I hope you start to feel better soon.

The activated charcoal idea is a great one.

Posted 8/11/2013 3:43 PM (GMT 0)
The egg smelling gas can be the sulphate reducing bacteria that proliferate often in UC flares. If it was me I would lower the sulphur content of my food until it subsided. I have started supplementing molybdenum which appears to be helping me with sulphur metabolism - if you try it though, start off on half the recommended dose like I did and never go beyond maximum recommended (which is a tiny drop a day).

When I had an infection early this year, prob c diff, when I took probiotics the reaction was horrendous, I presume a full-on battle between that bacteria. However, after flagyl knocked out the infection, VSL#3 and Mutaflor have been of great help to me.

Sorry you are in flare, hope things subside for you, do get a stool test, foul smelling stools can be a sign of c diff.
Posted 8/11/2013 4:41 PM (GMT 0)

DocGP said...
I haven't been this sick in years. I plan on filing a report wth the FDA.
Thanks.

I left the hospital in order to get VSL#3DS after my first really bad flare and since the hospital did not carry it. Bleeding stopped immediately. Unfortunately it has not been that effective since. I still use it but since insurance wont pay I go slowly.

You are most likely mistaken and something else is the cause of your illness.
Posted 8/11/2013 4:45 PM (GMT 0)
London Lurker,
how interesting that you are taking both Mutaflor and VSL3. This is some heavy-duty probiotic treatment. Good for you! I wish the idiots in FDA, here in the USA, would allow Mutaflor again! I would be the first one to buy it. It helped me tremendously with my UC and kept me in the remission for 1,5 years while I was taking it without any drugs!
I am happy for you.
Posted 8/11/2013 5:22 PM (GMT 0)

DocGP said...
Thanks. For those who have experienced badness from any probiotic, how long did it take to return to normal? What did you do about diarrhea? What about gas that smells like rotten eggs?



VSL didnt work for me either. I started with 2 caps. Next day had headache, nausea and constipation. Took Triphala powder to clear the system that night. I was back to normal the next day.

A few days later I braved 1 caps a day too. Same result except not as constipated as previously. I decided its not for me.

I would still like to try Mutaflor. The bafido and lacto strains didnt do good with me. Also I am a vegan so these bacterias may have different effect on guts of people with different diets. There was a post here a few weeks back that talked about bacteria composition in guts of people with varying diets.
Posted 8/11/2013 9:08 PM (GMT 0)
Sorry for you guys that Mutaflor is banned. I did read one study that suggested it could have a cellular effect that could potentially be cancerous but every other study is positive and I just can't believe that Germany, which is a sensible country with excellent healthcare, would allow this to be sold in every pharmacy if it was dangerous. This is a country that regulated St John's Wort after all even though most don't. I do think that it is helping me. I should do another Genova stool test because a few years back I showed negative for any beneficial E coli, would be interesting to see if it is higher now.
Posted 8/11/2013 10:23 PM (GMT 0)

London Lurker said...
I did read one study that suggested it could have a cellular effect that could potentially be cancerous but every other study is positive

Did that study have a safe dose for mutaflor? As in at what doses they saw that effect or such a thing wasn't mentioned?

I just looked at the safety page of mutaflor (http://en.wikipedia.org/wiki/Mutaflor#Safety) and it doesn't list any warning or concerns. Plus your point about Germany allowing it (and so does Canada) does ease my concerns. I would really like it to be available in the US.
Posted Yesterday 2:47 AM (GMT 0)
VSL 3 enema works very well.
You need to put at last two packets of vsl powder in water, and make enema. If you have problem to find a container for enema, you can use the bottle of asacol clisma. Empty a bottle of asacol clisma and put inside water with VSL 3.
It will increase bowel flora directly. The VSL 3 taken orally it goes to be destroied from stomac acid and doesn't work...
Posted Yesterday 4:27 PM (GMT 0)
Doc,

Sorry you are having major problems and a resulting flare.
Sounds to me like you might have c. Diff.
Have you been tested for it!

Hope you feel better soon.
Posted 3/10/2014 5:37 AM (GMT 0)
Hi All,
I just registered here to post my own story about VSL#3. In 2012 I started taking VSL#3 pills, 6 per day for 7 days. I also had the same symptoms and terrible bleeding. I got esophigitis and was hospitalized. I later would find out the whole problem was that the medicine which I had bought off amazon was not refrigerated!

In 2013 my UC got so bad that my doctor told me to try VSL#3 DS, or start on immunosupressants. I was having the worst flare of my life and unable to leave the house. After starting on VSL#3 DS slowly, I had some bad cramping, gas, and black stool for 10 days but then all my symptoms stopped. I ramped up my VSL#3 DS to 2 packets a day and made sure I was eating healthy. Since then I have been feeling 100% better.

I would highly recommend to try VSL#3 again, but please make sure you buy it from a reputable source who you know is storing it properly.
Posted 3/10/2014 10:42 AM (GMT 0)
Ray,

Welcome to the forum.
Thanks for sharing your story with VSL.

That's a huge difference - refrigerated vs unrefrigerated!
Posted 3/10/2014 12:18 PM (GMT 0)
That reminds me, last summer I had a cup of VSL#3 (I take the granules) that I forgot about and so had been out for a long time before drinking. I should not have drunk it, it says to drink straight away, but I thought can it really hurt and did so. I had terrible gastric pain afterwards, it had tasted fermented and I guess it meant that the bacteria got into the stomach and small intestine rather than having a chance to get to the colon where they are meant to live.

I'm not too well at the moment so have reduced my VSL#3 as I am not sure if it is good to constantly have so much bifidus. I also cut down Mutaflor because of the cost and not enough research around long term effects of it. Who knows if I'd be feeling better if I had not cut it down....
Posted 3/10/2014 3:09 PM (GMT 0)
I mean really, 800 BILLION CFU's in one dose???? I'm getting diarrhea just reading it.

I hate to be the douchey one here, but have we gotten an answer to two things:

#1: is he a doctor, and #2: if he is, or if he is not, WHY HAVEN'T YOU SEEN ONE about THIS HORRIFICNESS??????yes, I have invented this word, feel free to use this where it is necessary.

I mean seriously, there is medicine and tests to fix this inadvertent mistake.
Posted 3/10/2014 3:40 PM (GMT 0)
I believe the OP when he related his bad symptoms from VSL#3. My gut hated Florastor but liked VSL#3 until one day I just felt nauseous drinking a packet (after 2 years drinking it with good results). So I quit using it. Perhaps my gut was saying it didn't need it any more, that's what I think.

There are many reasons for the OP's reaction: that mix of probiotics was not good for him, the batch itself was bad, the amount he took (not an overdose) caused a disruption in his gut flora. I'd stop blaming the OP, he's just reporting what happened and clearly he did not take too much according to the guidelines but without more studies he is on his own as far as dosing.

We've seen so many meds work for some people and not for others.
I think he was/is right to report to FDA, how else can statistics be honest.
I wish I had reported my horrible reaction to Cipro 12 years ago but when you're sick that's not possible.
Is Cipro bad? Yes, for me but not for millions of other people.
Posted 3/12/2014 4:28 PM (GMT 0)
After being in the hospital for an asthma attack for two days I went home. @ days later I started diar. After 6 days not being able to leave home because of going 20 to 30 times a day of diar. my doctor asked my husband to bring in samples and I got c-diff from the hosp. The doctor did a colonoscopy and put liquid vsl#3 all over my flora bed to hopefully help to add good probiotics to the flora bed might help. It did with strong antibiotics. I wound up now with IBS and I take librax to stop the cramping, bloating and pain. Since then (2 Years ago) I take 1 vsl# 3 daily. Knock on wood I have been doing better. I also take 2 sometimes 3 a day of librax. It definitely helped with the pain and cramping and bloating. I hope you find what you need. My daughter had same issues like IBS all the time and she told her doctor her mother was taking librax for the same symptoms and she is taking librax and her problem cleared up. We take the generic brand of librax. What a savior. I wish you luck. Denise
Posted 3/12/2014 8:30 PM (GMT 0)
Never had a problem with it.

Read about it in the hospital which did not carry it, got out and got my hands on it immediately from GI doc.

Began downing VSL#3DS packs twice daily and no problemo.

I keep some on hand as insurance refuses to pay. I accidentally ate raw chicken and started downing the packs just yesterday. Doing better with it.
Posted 3/12/2014 10:25 PM (GMT 0)
Hi DocGP,

Were you ever able to resolve those symptoms? I had a similar horrible reaction to the VSL#3 after trying to culture it in homemade yogurt. Now I have BRUTAL cramping/ab pain and gas, especially after eating, and my stool form has turned to straight flushes of water. I had been improving so much in my year long flare I'm going through and I feel like this just set me back to square one. Any ideas on how to resolve this?? I've had some rough stretches, but this is the worst I've ever felt.
Posted 3/12/2014 11:14 PM (GMT 0)
I don't know if anyone noticed but the last time DocGP posted anything was 8/10/2013...just saw that.
Posted 3/17/2014 12:32 AM (GMT 0)
I just joined as I was searching for answers and think I can learn from both the positive and negative post / responses. Thanks
First, DocGP... if you're out there I hope your issues were resolved and you're feeling much, much better.
I have been battling colorectal cancer. Total colectomy and J-Pouch procedure 4/2013. This was followed by complications from the surgery that resulted in a 54 day hospital stay and weight loss of 50+ pounds. I was extremely weak and rather beaten up upon discharge. Maximum weight loss to date 68 pounds. I treated with chemotherapy for six months and have recently undergone surgery for ostomy closure.
I was aware that it would take several days for my GI system to "wake up" and begin to function again and months for my body to fully adjust to the J-Pouch. As soon as my system woke up the gas pains were bad. They subsided quite a bit before discharge from the hospital. Overall GI system was still unsteady (and rightfully so I guess).
My surgeon prescribed VSL#3DS to get "good bacteria" working in my gut. I have had extremely bad cramps and gas followed by diarrhea and minor bleeding. Some days worse than others but have only felt "good" 2 days out of 10 since discharge from hospital. I know my GI system is learning to function with the J-Pouch and adjusting to the high bacteria levels from VSL. This will obviously take some time. From reading many of your post I see that the double strength VSL may be a bit aggressive and there could also be possible effects from immune system (due to the chemo).
Just wondering if anyone had similar circumstances to mine and how your "adjustment" period went? How long? I think I may need to back off the VSL, perhaps 1 packet every other day.
I see the doc in a couple of days. Will be interesting to see what he says.
Any feedback welcomed.
Posted 3/17/2014 1:13 AM (GMT 0)
Hi StevieWonder,

So I had to be admitted to hospital bc my symptoms got so bad after my reaction to the VSL#3. I had been tolerating VSL capsules and even DS packets for some time before the DS packets started to make me very nauseous. They were helping my stool form and urgency for the first time in at least half a year though, so after first playing with the dosage to no avail, I figured it was worth a shot to try to change the administration mechanism by mixing/culturing it with homemade yogurt. I think I must have cultured an insanely high dose in the yogurt because that's when I started having BRUTAL cramps/gas, ab pain, and flushes of diarrhea.
Anyway, at hospital I had a flex sig and an upper endoscopy done and the endoscopy revealed a significant amount of inflammation in my stomach. Doctor's initial thought is I have H. Pylori infection, but biopsy results officially come back tomorrow. If your symptoms persist, I would recommend asking doc to look down your throat at the stomach and small intestine for an infection as well as looking at your colon. I'm convinced I've had this infection for some time because I've been telling my doc for a while that my flare for the past year and a half (longest of my life by far) with stubborn diarrhea has been different. Too strange how I have been able to improve so many of my symptoms but not the diarrhea. Stool tests can look for infection too, but nothing beats looking at a the inside and taking biopsies. Stool tests were always negative for me, though I'm not sure we ever tested for H. Pylori.
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