GI Wants me to Try VSL#3 but its too Expensive

[Jennifer]

Only problem I have with trying it is that its expensive and my insurance wont cover it.

I did a search on the forum and found an assistance program for VSL#3 DS (stands for Double Strength) but its for UC and for people who have an ileal pouch. http://www.crohnsforum.com/showthread.php?t=40161 I don't have either but called anyway. No one answered so I left a message and am waiting for a call back. We shall see if they will accept people with Crohn's disease. If they don't then I'm not sure what my options are. It would be awesome if there was another assistance program or something so if you know of one, please share.

My GI gave me a grocery list of all the things I'm supposed to mix it with, one being something that isn't sold in stores around here (Lassi).

1. Kefir 4oz
2. Almond Milk 4oz
3. Lassi (this is not sold around here) 4oz. If not available then use Emmentaler cheese 2oz
4. Pomegranate Juice Concentrate (ask pharmacist if there's a drug interaction with this) 4oz
5. Raw Apple Cider Vinegar 2tbs
6. Flax Seed Powder 2tbs

Edit: Do not add the vinegar to the mixture. It makes it taste disgusting and you may not be able to drink it which would be a waste. uke_r: I didn't add the cheese because I tasted it beforehand and knew it wouldn't work well together (dunno why I thought the vinegar would).

I have 3 sample doses of the VSL#3 from my GI but have to wait to try it until I go on an Easter egg hunt for the shopping list above.

My GI said that it can take up to a week to notice any benefit so the samples I have likely wont get me very far. Hopefully the assistance program above will call me back soon, accept me into the program and send me more for free. If they do then I'll let you know.

For those who have tried it, did it cause any side effects at all? Did you notice any sort of benefit? For those who stopped taking it because maybe you didn't notice any change at all, how long did you take it before you stopped?

 

[Essieluv]

I was prescribed VSL#3 DS last month. I've been taking it every night, but haven't noticed any positive change. I am a lot more bloated, though. Keep in mind that I am one of those weirdos who cannot tolerate probiotics for some reason, so this was kind of a long shot. Thankfully, after a few phone calls, my insurance decided they would cover it with a twenty dollar copay (for twenty day supply). If my insurance sad no, then the assistance program was my next choice, although I too have Crohn's. I hope you are able to get it free/super cheap and that it helps you!

 

[Jennifer]

Essieluv is what I have listed above the usual mix for it? If not what do you mix it with?

 

[Essieluv]

I just put it in applesauce. To be honest, I've never heard of mixing it in the other stuff. But I don't know much about VSL, so that could be why? The package just says to put it in a cold, non-carbonated beverage, yogurt, or applesauce. I tried it in lactose-free yogurt, but it was sickening. It's not too bad in applesauce, though.

 

[Jennifer]

I now have all the crazy ingredients listed above (minus lassi). The suggested cheese substitute is a hard cheese, my guess is this wont taste good at all. I'll mix it up later today and let you know how it is.

 

[Essieluv]

How was it?

 

[Jennifer]

Sorry haven't been able to mix it yet. Been really busy with family for some reason. Tomorrow for sure. I tasted the cheese tonight and think I may eat the cheese separately rather than adding it to the smoothie.

 

[wild_one353]

i used it back in 2009 to see if it helped my crohns', at that time i didnt do a very good test to make sure it was helping or not, but generally i thought it did help a little bit.

in 2012 i decided to try it out again with a better test to confirm any benefits, without changing other variables in my regimin that is. iin this case, i had a bad reaction, i just felt so aweful. i reasoned that it was the maufacturer defect in product quality. so i bought another similar and less expensive probiotic with almost exactly the same strains of bacteria and similar quantity of bacteria, no similar bad reaction was experianced, THEREFORE, i concluded it was a manufacturers defect.

so i called the company telling them about my bad experiance in order to warn others, and possibly get a refund as i had used their product before and it provided some benefits a s i vaguely recall. they denied a refunded to me, and were actually a bit arrogant, belittling and rude to me, THEREFORE, i do not recommened this probiotic nor this company to anyone ever again, as they are unreliable and i plain out do not like them or their attitude.

 

[Jennifer]

Thanks for sharing wildbill_52280.

I tried the mixture posted above (half of the amount so I wouldn't have to drink as much) and it tasted AWFUL. It tasted worse than bowel prep. I even had to try and chug it like bowel prep cause if I sipped it, I would never have finished it. Yet while chugging I gagged twice. Like I said before I wasn't going to add the cheese because that's just going too far flavor wise. I do not recommend adding the vinegar to the mixture. I'll try it without vinegar tomorrow and let you all know how that is.

So far I don't feel any different and I finished it a few hours ago. Not getting sick is a plus.

 

[Jennifer]

This time I put in more Kefir (its a fruit flavored one so tastes good), kept the almond milk, pomegranate juice and flax seed powder the same. Something still doesn't taste right. I think tomorrow I'll just use the Kefir. If it still tastes funny then that means its the VSL#3.

I need to call the company back that I mentioned above. They did return my call but only gave me their call back info so still not sure if they'll give it to Crohn's patients for free.

 

[Sophia]

Hi,

I used this in 2010 for a few months. I'm not sure whether it helped, because I also did a lot of changes to my diet at the same time, but it's got a lot more probiotics than the capsules I can get with no prescription from the Pharmacy, and is not considered to have any bad side effects as far as I know. I didn't have any side effects. I used to mix the powder into my yoghurt mostly, which I thought worked out well. My doctor said I could mix it with anything, but it doesn't mix well with a lot of foods, I think.

Good luck! :*

 

[Essieluv]

The VSL does have a strong taste, I can't quite describe it. Almost sour? This is going to sound gross, but to me I guess it almost tastes like spoiled dairy :eek2:

 

[Jennifer]

Oh no. I guess that's why everything tastes gross. Well taking out the vinegar did help a bit though.

 

[David]

Did the company ever get back to you Jenn?

With the almond milk, be sure to check the ingredients and make sure there isn't any carrageenan in it. It's a common additive in almond milk and people with IBD (well, everyone actually) should avoid it in my opinion.

 

[Jennifer]

Oh right I forgot about the Almond milk. D: I'm sure it does have it.

I called again but the recording service says that the office is closed but to enter my parties extension number at anytime. I did, no answer and left a message, no calls back yet. The office is still closed. Maybe they were doing a 2 weeks break for the holidays? Or longer? I'm still trying though.