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Visbiome probiotics - symptoms

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Ulcerative Colitis
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Posted 9/9/2019 5:20 PM (GMT 0)
I was diagnosed with mild ulcerative colitis 3 years ago. The 1st year we tried a lot of things (Lialda... Apriso - which is what I am on now) and then a month of Predinisone. After the Pred I was great (remission) for about 10/11 months. Then started a slight flare doctor did another month of Pred but my Dr told me we needed another colonoscopy and he didn't want to keep with the once a year one month on Pred. He wanted to wait a couple months after I was off the Pred to do the colonoscopy since I was doing so well. He also suggested to try VSL# 3 (I used the Visbiome because of the lawsuit) probiotics during that time. A month after stopping the Pred I was still doing well so I started the Visbiome. I started with one a day for the 1st couple of days and then moved up to 2 a day. After a couple of days of 2 a day Visbiome I started having horrible gas, mucus and some bright red blood. This is probably the most severe symptoms I have ever had usually I just have increase stools and mucus. Do you think it was the Visbiome? I stopped taking it but still am having the symptoms. I have not told my GI yet because my colonoscopy is next week and this started 2 weeks ago.

Post Edited (Twingirls) : 9/9/2019 12:34:17 PM (GMT-6)

Posted 9/9/2019 6:50 PM (GMT 0)
My response was similar - started a flare very shortly after starting Visbiome. I had taken VSL#3 before. I hadn't had a flare in YEARS. As soon as I made the connection I immediately stopped taking it, ordered VSL#3, and right now after about 4 weeks of symptoms, the flare is over.

What also helped get over the flare: qing dai, turmeric, anti-inflammatory diet (cut out sugar, bad oils, refined carbs, processed meat) and will continue this for a while, and taking digestive enzymes if consuming dairy, but I cut out most dairy. I also started intermittent fasting, no eating from 8pm til Noon, just to give bowels a longer chance to rest.

I don't trust Visbiome one bit.
Posted 9/14/2019 9:56 PM (GMT 0)
you should try vivomixx, I believe it's the same as the good old vsl3, although I preferred vsl
Posted 10/21/2019 1:05 PM (GMT 0)
How are you doing now Twingirls? Did you decide that it was the probiotic that caused the symptoms? What did your GI say? I hope you’re in remission.
Posted 10/21/2019 1:34 PM (GMT 0)
Interesting. My doctor told me there’s a study that suggests taking VSL can keep you from developing another flare. I recently switched from Culturelle to VSL. I was doing fine and then couldn’t get VSL anymore so I got Visbiome. Shortly after I started a flare and now have had another bout of unusual symptoms.
Posted 10/21/2019 5:32 PM (GMT 0)
Many have been on VSL here, didnt stop most of their flares. If it agrees with you, stay on it regardless of the promises.

q
Posted 10/21/2019 6:27 PM (GMT 0)
I just ran out of vsl#3 DS I’ve been taking. Do any of you stop staking and be just fine without?
My insurance doesn’t cover it so Dr gave me samples he has. He didn’t say anything about continuing..
Posted 11/5/2019 3:08 PM (GMT 0)
Since I stopped using vsl#3 the icky feeling in my gut has gone away. I guess it didn’t agree with me after all.
Posted 6/27/2020 7:28 PM (GMT 0)
Posting this for awareness:

I have a J-pouch and there is a small rectum cuff from my colon left after surgery (1-1.5 inch width). Over the past few years, I have had complications and inflammations with it. I tried many different drugs and finally settled for Remicade which worked for me since 2016. In February 2019, my doctor pushed for this probiotic (Visbiome extra strength 900) claiming this can manage this small amount of colon (rectum tissue) left and I don’t need to do Remicade perfusions anymore. I read good reviews about it and agreed to take the probiotics even though I was still skeptical about it.
So I had my last shot of Remicade in February which would hold me up for 2 months and I started to take Visbiome immediately. Long Story short, It’s June 27th and I have pain and just did a pouchoscopy and my rectum cuff is infected with ulcers. Now I am on a heavy dose of Prednisone for 40 days and going back on Remicade again.
So basically as soon as the lifetime of Remicade finished (Sometime in April), in 2 months off Remicade, this probiotic couldn’t do anything for such a small amount of rectum left. This probiotic is so expensive and won’t do much for pouchitis (at least for me) I don't how it will work for people with UC and whole colon.
I would just recommend being cautious about your decision going on this probiotic and don’t just fall off for advertisements, what your doctor says (they get deceived by selling agents and what every they present to them) and please, please don’t stop taking your medications if you are on it for the sake of only using this probiotic (especially if you have a mild case UC cause it might get worse and ruin it all for you)
Posted 7/3/2020 6:18 AM (GMT 0)
Visbiome is the original Dr Simone formulation that was VSL3 before late 2016. In Europe Visbiome formulation is sold under Vivomixx name.

For those unaware of the background VSL3 is no longer made (since late 2016) with the same formulation (same exact strains) as it did originally before Dr Simone (inventor of the product) parted ways with the VSL3 makers. Makers of VSL3 attempted but failed to reverse engineer the Dr Simone formula and tried to pass it off as the same product. Dr Simone sued VSL3 and won in federal court. The court found that the VSL3 product was not the same formulation as the inventor's and cited them for false advertisement as their product was never the subject of the same clinical trials as the original formulation now used in the Visbiome product. Although the two contain principally the same probiotic bacteria strains, the formulation is not the same. Therefore while each product is similar, they are not the same. In addition to the difference in formulations, one (Visbiome/Vivomixx) has had years of study with more than 70 clinical trials to back up its claims of efficacy, while the other (VSL3) has none.

Regarding whether Visbiome was the cause of your flare I really doubt it. I have used Vivomixx (the same formulation as Visbiome) to resolve my flares. It's proven to be more efficient than mesalamine in stopping mild flares. However when it comes to UC nothing is for sure. Sometimes you are doing just fine and then for a no objective reason you start to have inflammation regardless of anything.
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