Update on VSL#3 after three weeks - warning, toi... - LUPUS UK

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Update on VSL#3 after three weeks - warning, toilet talk!

Silvergilt profile image
15 Replies

Just wanted to give an update on how I've been feeling on this probiotic product. I got a 30 day amount of sachets and take one sachet a day as I was hoping it might address some bowel issues I've been having as well as digestion problems. I will admit this will have a lot of discussions of inner digestive stuff, so apologies to the more delicate among us, but needs must!

I cannot speak for everyone and your mileage may vary, but overall I'm impressed with this stuff, and if you've got problems with your digestion, or aspects thereof (ahem), then I'd recommend speaking to your health pro about maybe giving it a try.

I've had issues with digestion, bloating, constipation and malabsorption for a while now. I dreaded taking tramadol (even though it helps with pain) because even one tablet would require me to take a scrip for Laxido along with it. For months, I've had a growing pharmacopeia of fibre powders, suppositories, and senna tablets for tramadol usage, but also in case I do something really edgy like, and I'm serious, eating a risotto. Rice has become my mortal enemy over the last few years - even beans and other fibre, stuff that is supposed to be 'good for you', is like playing roulette for me.

After trying these probiotics for a few weeks now, I can take tramadol without problems, and I've been able to add rice and other carbs back into my diet slowly. My absorption issues seem to be improving - my chronic anaemia is calming down considerably, and I'm not as bloated. I'm also losing weight even though what I eat hasn't changed much other than introducing probiotic and fermented foods into my diet more - although I do so carefully. I'm finding I currently can only tolerate maybe a few tablespoons of fermented veg a day. The water kefir I've been drinking is nice, and I've been drinking more water kefir than juices these days. I mix the VSL with a glass of kefir and drink it daily.

I admit I didn't really think the probiotics were doing much until I missed my daily dosage for a few days. Constipation and bloating came back with a vengeance! I had to resort to my entire cupboard arsenal to try and sort it out, doing my usual routine of apple juice/coffee/senna/praying for death, but once I figured out it was due to not taking the VSL, I drank it again, and the following day my system started to re-regulate itself. I'm honestly quite surprised, and secretly impressed with how this probiotic is working.

According to my comparisons, while the fermented foods and kefir is really nice and I enjoy eating and drinking it, it just isn't strong enough to do much good for me. I will still work with both of them because a) I garden and preserving harvests is what I do, besides, homemade kimchi is awesome and b) water kefir is delicious, and the combinations I'm coming up with are wonderful - rose-water and ginger root, anyone? But on a scale of typical probiotics and VSL, the latter is what I'm terming 'industrial strength' levels of beneficial gut bacteria. It doesn't mess around.

What I have found is while I may struggle to eat too much in the way of fermented foods (tends to make me a bit more bloaty, but that could be due to the type of foods - beets don't agree with me, it seems), the VSL is very palatable. I don't have cramping, bloating, etc. I admit I was a bit 'parpy' the first week or two, so warn any significant others to wear a gas-mask! But eventually this evens out and my stomach settled down. It's rather odd, and I don't know how much of it has to do with the warmer temps and my usual infusion of spring energy, but after spending a rather listless winter, I'm feeling a lot less achey, my energy is returning, I'm able to eat foods I had previously scratched off the list, and my clothes are getting a bit looser on me. All very weird! But I'll take it.

So, for me personally I think I will try and keep taking this stuff for as long as I can afford it: no, it definitely isn't cheap. Maybe I could get a scrip in the future for it (oh wishful hopes and dreams!) but for now I'll have to fork out the funds hope for the best. What I'm wondering is, once you take it for an extended period of time, can you wean off? I mean, the goal is to eventually have your system regulated enough that the body takes over and keeps its own intestinal flora intact without the need for so much external interference. However, perhaps with people with more chronic conditions there might be a need for 'topping up'. I'll have to keep on top of the research for this stuff.

That's where I'm at right now: planning on placing another order next week when funds are available, and making sure I don't miss a dose for the foreseeable future.

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Silvergilt profile image
Silvergilt
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15 Replies
EOLHPC profile image
EOLHPC

👏👏👏👏👏 WOW: GRRRRREAT post & GRRRRRREAT news....thanks vvvvvv much for EVERY detail: all VVVVVV HELPFUL

Please keep us posted on this as time goes by

🍀😘🍀😘🍀😘 coco

EOLHPC profile image
EOLHPC in reply toEOLHPC

PS

I just phoned VSL#3 amd asked their medical advisor if there is any evidence the product is effective alongside the sort of daily wide spectrum antibiotic treatments immunology has me on indefinitely (for my immunodeficiency: early onset before prescription immunosuppression hypogammaglobulinaemia + lymphopenia)

The medical advisor said daily antibiotics will of course affect VSL #3, and the firm has no recorded evidence re cases like mine & VSL#3, but I could do a high potency trial of 2 sachets per day for 3-4 days and see what happens....

2 months ago Gastroenterology actually suggested I should be on probiotics, and the consultant seemed pleased when I said I'd been taking them daily in both supplement + live yogurt form for many years. I'm at gastroenterology clinic in early April & will see what they have to say about a VSL#3 trial 🤞🤞🤞🤞....and then I'll see what immunology think too (I'm there in clinic late April)

Thanks again SG for the encouragement

Wishing you ongoing success with VSL#3

Lupiknits profile image
Lupiknits in reply toEOLHPC

Brilliant success! I'm so pleased for you. I had ordered some, too. Alas, I can't report back (yet) because some kind of stomach upset has left me unable to keep meds down. Of all the meds I take, I think hydroxy tastes the worst when it takes a gravity defying trip back up. Not wasting my VSL#3 money on my anti gravity trick.

Stomach settling, will start again and hope for the same success as you.

Silvergilt profile image
Silvergilt in reply toLupiknits

Ugh, that's rough. Yeah, I've had some vile experiences (sulfsalazine dyeing my teeth bright yellow, that was fun), so I feel you! I wish you ease.

flossy1 profile image
flossy1

Thank you Silvergilt. Your post was really interesting. It's sad when we lupies find digestive thingies..(being polite) interesting, but hayho!! Did you buy from a shop or on line? I looked at Amazon but some buyers had issues with the VSL#3 not being kept cool during delivery.

Silvergilt profile image
Silvergilt in reply toflossy1

I definitely would recommend buying direct - it was delivered from the company in a refrigerated van. I would suspect Amazon also charges a markup on the product so you are paying more for it, and for something which might not have been kept in ideal conditions.

Lupiknits profile image
Lupiknits in reply toSilvergilt

Agree with Silvergilt. I bought it direct, and it came refrigerated and in a cool parcel. Straight into the fridge. Amazon are often good, but I'd say go for the direct order

PMRpro profile image
PMRpro

You know what I like about this forum? That there are sensible, no-holds-barred discussion.

I might just try it. I don't think it was vsl#3 OH was told to get but it did sort out his post-viral IBS. It comes back every so often but nothing like as bad as it was.

Silvergilt profile image
Silvergilt in reply toPMRpro

I used to have all kinds of borderline convos with fellow spoonies on Twitter - stuff the 'norms' would call 'oversharing'. But I think there's a form of strength and solidarity in sharing the most vulnerable, unpleasant aspects of illness we hide even from family, just trying to figure it out, just trying to get some answers without judgments.

It is definitely worth a discussion and a try; I was pretty dubious, but I can't deny my own experience. I wouldn't go so far as to say it will work for everyone. But nothing ventured...

Thankyou for this. I was having a conversation with Natura yesterday about bowel problems and digestion. I hope she has seen this post.

Natura profile image
Natura

Hi Silvergilt....hmm....sounds like me. I have been on a product and diet for 5 months now. Through this food program (I dont eat grains anymore still, nor dairy or anything gluten), i purchased a pretty infamous Dr. (Not allowed to mention names, I believe.) product. It has probiotics, digestive enzymes and anti inflammatory herbs. Took me awhile to get the dosage right through the dr. Running the program. If i miss a day, i am a mess again. I took it for 90 days straight. Considered a repair supplement. As soon as I stopped, the weight came back on, and my digestive issues returned even though I remained off the grains, dairy and gluten.

Everybody is different. I suspect I have absorption issues since my mom had (and died) from colitis. I am planning on remaining on this for life probably. I also am still healing my intestines with this program. Fermented foods are considered natural probiotics. I had a little trouble liking these, so if you have any recipes to share, please message me. I really should get into it. I bought a bunch of jars, and didnt stick with.

Thanks for sharing.

Silvergilt profile image
Silvergilt in reply toNatura

I am firmly of the opinion that if you don't like something, don't eat it! Fermented foods are a love-hate thing for some people. I think sauerkraut is disgusting! But the Dutchman loves it. We both love gherkins, and I made a really amazing pickled spicy garlic cloves and I want to try again. I've experimented with a yuzu-based pickled vegetable blend that I literally couldn't stop eating, and I think it will be my go-to. Again, only make what you enjoy. Water kefir is nice. Milk kefir I find rather icky. Kombucha made me ill, even though I liked the taste. It's a bit of a crapshoot. I'm going to do a lot of fermenting this summer, but I'm going to mix it up a little - the beets smelled like feet and I really didn't enjoy them, but the spicy cauliflower I made recently with peppers was really good.

field profile image
field

Thank you sooo much for your up date. Its great news, very encouraging.

Sorry for late addition. I have been going through a very rough patch lately takkng a lot of meds which r playing havoc on my stomach. I will carefuly try this.

Thanks

RedLizzy profile image
RedLizzy

I have some actual experience, but a lot of research into this, and the short answer is NO. If you stop in a few days you still start reverting back. The problem is this does not have human sourced bacteria, so it will not colonize and is here today, gone tomorrow. In order to keep the results, you need to use human sourced bacteria that has the potential to adhere and colonize. There are such bacteria, but whether they will be helpful to you is another dilemma. It is all experimentation at this time.

Liz

Silvergilt profile image
Silvergilt in reply toRedLizzy

That's very interesting and I was wondering whether or not this would be the case. It makes sense, however - and yes, I have noticed this myself as I stopped taking it due to forgetfulness for a few days and paid the price. Thanks for your input.

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