Probiotics for UC: Two doctors disagree!!

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tchrmgr
Regular Member


Date Joined Mar 2011
Total Posts : 33
   Posted 8/4/2012 2:41 PM (GMT -6)   
Hi All,
 
Great story.  I was seeing one doctor for my UC and asked him about VSL DS (which I discovered on this blog).  He said basically, "Don't bother!"  So I ditched him and made an appointment with his associate (IN THE SAME OFFICE).  After reviewing my case, this new doctor said to me, "Have you heard of this probiotic called VSL? It's been found to be very effective for UC and you can get it OTC."  How about that guys!  So typical!  Anyway, I explained to him that the really effective form of the probiotic (the VSL #3 DS) requires a prescription (which he did not know!).  I convinced him to write the script for me and finally got the stuff today.  It's very expensive but my insurance explained that if I got a 90-day supply, it would be much cheaper.  We'll see how effective it really is and I'll keep you all posted. 
 
Regards to all!
 
60 y/o white female
Dx in 2010 w/ UC
Meds: Balsalazie Disodium 750 mg 3 caps/ 3X daily
          Citrucel
          Low Residue Diet (yuck!)
          VSL #3 DS
 
 

Post Edited (tchrmgr) : 8/4/2012 1:48:00 PM (GMT-6)


stereofidelic89
Veteran Member


Date Joined Sep 2011
Total Posts : 1927
   Posted 8/4/2012 4:09 PM (GMT -6)   
Good for you tchrmgr! Did you know you can purchase regular VSL#3 without a prescription? Also, when you find out, can you let me know how much your insurance covers for VSL#3DS?? I'd really like to get it, but I'm afraid even if insurance covers some it will be twice as $$$$$!
Meds: 2400mg Asacol daily
Dietary: Candida-Control Diet, Gluten-Free, VSL#3, Phytostan, ParaGuard, Similase, ADP (anti-fungals)
Amazing Herbs: Slippery Elm, Licorice & Marshmallow Root / Peppermint & Chamomile

Grad student, diagnosed severe Crohns/UC - Sept. 2011
In the past, SCD=remission, Metametrix lab tests reveal yeast overgrowth.

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4492
   Posted 8/4/2012 4:44 PM (GMT -6)   
that's great you got it covered by insurance! i remember i went to pick up my VSL DS script and it was $187 for a 20 day supply. i couldn't afford that so i don't take it, but i'd recommend starting with half a packet a day. i got a lot of gas and bloating the first couple of weeks i took regular VSL, but it eventually subsided.
Joanna, 22
8 fecal transplants- got worse.
taking- probiotics, vit d, 4.5 LDN , l-carnitine, B6, vit a, iron infusions, aloe, zinc, peppermint
tried- canasa, pred, 6mp, remicade, rowasa, lialda, entocort, l-glut, vit E + VSL enema, NAG, prilosec, zofran, psyllium, bentyl, cipro, flagyl, welchol
no meat, dairy, eggs, gluten, beans. include-juices, fruits, veggies, greens, grains, soy, nuts/seeds

SS0000
Veteran Member


Date Joined Feb 2012
Total Posts : 673
   Posted 8/4/2012 5:20 PM (GMT -6)   
The last time I sat in my GI's office I said the very same thing , imagine what didn't opion or care u can get in the very next room !

tchrmgr
Regular Member


Date Joined Mar 2011
Total Posts : 33
   Posted 8/4/2012 5:49 PM (GMT -6)   
Thanks, everyone, for your replies. Here are the details for the VSL #3DS: I had first received a supply of 20 packets for a whopping $90.00. I callled my insurance company (CareMark) and they said that if I could get another script for a 90-day supply it would substantially reduce the price. I did and the 90-day supply turned out to be $50.00. That's a much better deal.

The label says: "Take as Directed" but the doctor never told me how to take it or how much. I'm going to start with 1 packet a day, mixed in cold water and see how I fare. I'm a bit nervous by what banangirl said about the gas and bloating so we shall see what we shall see!

stereofidelic89
Veteran Member


Date Joined Sep 2011
Total Posts : 1927
   Posted 8/4/2012 6:56 PM (GMT -6)   
Sounds good, I hope a few members chime in, because I'm pretty sure 1 VSL#3DS packet = 2 VSL#3 capsules. Good luck!
Meds: 2400mg Asacol daily
Dietary: Candida-Control Diet, Gluten-Free, VSL#3, Phytostan, ParaGuard, Similase, ADP (anti-fungals)
Amazing Herbs: Slippery Elm, Licorice & Marshmallow Root / Peppermint & Chamomile

Grad student, diagnosed severe Crohns/UC - Sept. 2011
In the past, SCD=remission, Metametrix lab tests reveal yeast overgrowth.

tchrmgr
Regular Member


Date Joined Mar 2011
Total Posts : 33
   Posted 8/4/2012 8:14 PM (GMT -6)   
Didn't know that.  If that IS true, how many of the packets should I be taking per day?

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4492
   Posted 8/4/2012 8:57 PM (GMT -6)   
i started out with 1/4 a packet a day of VSL#3. i can't remember the amount that is in a whole packet (450 billion?) i worked up slowly because the gas was pretty noticeable. i looked pregnant, too. i think it's because the probiotics i was taking before were only 1 billion bacteria. i'm assuming the VSL#3 DS is 900 billion so that's quite a bit if you generally don't take probiotics. i know there's trillions of bacteria in the colon, but i still think you should introduce it slowly.
Joanna, 22
8 fecal transplants- got worse.
taking- probiotics, vit d, 4.5 LDN , l-carnitine, B6, vit a, iron infusions, aloe, zinc, peppermint
tried- canasa, pred, 6mp, remicade, rowasa, lialda, entocort, l-glut, vit E + VSL enema, NAG, prilosec, zofran, psyllium, bentyl, cipro, flagyl, welchol
no meat, dairy, eggs, gluten, beans. include-juices, fruits, veggies, greens, grains, soy, nuts/seeds

Mammatus
Regular Member


Date Joined Mar 2011
Total Posts : 98
   Posted 8/4/2012 9:12 PM (GMT -6)   
Does this stuff work for you? I have not had any sort of supplement work for me to any decent degree, but am always open to trying stuff.

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 2300
   Posted 8/5/2012 7:23 AM (GMT -6)   
Probiotics are very effective for most of us but individuals vary over specific brands. VSL#3 works for me but I find that Mutaflor and several capsules per day of Culturelle are just as effective.

VSL#3 has the advantage of being endorsed for imagardener2 which might mean something because she usually does not find any supplements to be helpful.
Male/60 DX ulcerative colitis Feb08, or maybe Crohn's colitis.
No Meds, allergic to Mesalamine. Remission since Mar10. Psyllium seed mixed with VSL3 is very helpful. Food journal instead of SCD.

Lots of fruit & vegetables (but no plums or cruciferous), no soda, no gluten, no HFCS, no xylitol or sorbitol, no trans fat, no shellfish, few processed foods, no carrageenan.
Probiotics, fish oil, multivitamin, extra D3, K2, E complex, phos choline, magnesium, boswellia, curcumin, glutamine.
Nature created all of the locks, therefore Nature has all of the keys

Antiflare
Regular Member


Date Joined Nov 2011
Total Posts : 80
   Posted 8/5/2012 8:04 AM (GMT -6)   
My 14yr old son takes 3 x 450billion Sachets pr day, we started by splitting the first sachet over three days,. then the next over two days, then one a day etc etc eventualy getting up to three sachets a day.
He did not have any trouble with extra wind, that was already there before he started!
Diagnosed with proctitis in 1998, Non Specific colitis 2010 (mild to moderate)
2 x 1200mg Mezovant (once or twice daily)
1 x 500mg Asacol Supp'

hineycase
Regular Member


Date Joined Nov 2011
Total Posts : 125
   Posted 8/5/2012 2:12 PM (GMT -6)   
2 VSL capsules = 225 billion probiotic bacteria
1 OTC Sachet = 450 billion probiotic bacteria
1 DS Rx Sachet = 900 billion probiotic bacteria
 
I started with 1 OTC Scahet a day for a month (450 billion) and moved to 2 DS Rx Sachets (1800 billion) when my GI prescribed it for me. I never had a problem with gas or bloating; I guess that is a very individualized thing.
 
BTW...my GI was not familiar with VSL either when I first spoke to his nurse. As a result, the nurse set up a meeting with a VSL Rep for the GI's entire office staff to educate them about this medical food. He now prescribes it to patients on a regular basis. I think you have to remember, most of these GI's are inundated with patients and proceedures. Not to let them off the hook, but sometimes I think the people in this forum do more research than the practicing GI's who are putting in 12 - 16 hour days...but, then again, many people here seem to have the time. If your GI doesn't know about VSL, help educate him/her.
Dx: Dec 2010
Meds since Dx: Asacol 1600mg 3x day
Medical Food: VSL#3 DS - 2 sachets daily (1800 billion)
2 Ultimate Omega soft gels daily
Other: 1 cup of white rice a day has eliminated urgency.

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 1657
   Posted 8/6/2012 9:15 AM (GMT -6)   
I had some initial gas, and even a bit of smelly diarrhea. This seemed to be die of of some of the bad bacteria as the VSL recolonized. If I take 3/4 DS packets a day I still get some gas. There was also more initial stool production then there is now. 1/2 of dry content of stool is dead bacteria. Once the colony wars and die off was over, there was less noticeable stool improvement.

Still, I have fairly loose semi-formed stool now after 3 years of totally liquid diarrhea. Still have moderate blood too. I can see VSL helped me, but unfortunately not one of the people who got complete remission.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2142
   Posted 8/6/2012 12:58 PM (GMT -6)   
if you get a prescription you can use FSA $.
UC Pancolitis: dx'd 2000; Remicade since 4/25/11, every 8 weeks. Kidney Disease (Minimal Change Disease): dx'd 2007 caused by 5ASA's (thank you sulfsalazine, lialda and asacol). Current meds: Remicade & prenatal vitamin. I feel better than I have in years being off the ton of medication I was on before.
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