Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 Hey Folks, here is the status: 49 Yr old male feeling great except for colitis PSC DX 92 UC DX 97 Liver TX June 2004 UC returns, February, 2005 Colectomy, well most of it anyway, (10 " left from the descending) Jan 2006 LFTs are doing good, only Alk Phos in the 200s. Colitis is moderate in what's left of my colon. Canasa, Sulfasalazine a little bit. Cipro helps, and budesonide helps. But I'm seeing my GI on Tuesday, and if what I'm reading here is correct, VSL#3 has a damn good chance of fixing my colitis. So, I think I am going to ask my GI to put me on it. Any comments? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 for what it is worth the pharmacy (in the gi medical building) said all the docs. are recommending vsl#3 to their patients.-rachel > > Hey Folks, here is the status: > > 49 Yr old male feeling great except for colitis > PSC DX 92 > UC DX 97 > Liver TX June 2004 > UC returns, February, 2005 > Colectomy, well most of it anyway, (10 " left from the descending) Jan 2006 > > LFTs are doing good, only Alk Phos in the 200s. Colitis is moderate > in what's left of my colon. Canasa, Sulfasalazine a little bit. > Cipro helps, and budesonide helps. > > But I'm seeing my GI on Tuesday, and if what I'm reading here is > correct, VSL#3 has a damn good chance of fixing my colitis. > > So, I think I am going to ask my GI to put me on it. Any comments? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 Hi- VSL#3 has helped Fred, and we thought it was the silver bullet, but he's having a mild relapse.He's back up to 2 packets of VSL a day. Also started on 1600 mgs. Sam-E per day to fight off the accompanying depression, It's working! Also seems to have the effect of lessening his urgency with UC. Doubtful your dr. will be able to prescribe VSL#3 as it's sold over the counter.Fred and I are convinced the VSL#3 has helped a lot, and would still recommend it. Wife of Fred, PSC 03/04, UC 03/06 ---support , " jms_758 " wrote: > > Hey Folks, here is the status: > > 49 Yr old male feeling great except for colitis > PSC DX 92 > UC DX 97 > Liver TX June 2004 > UC returns, February, 2005 > Colectomy, well most of it anyway, (10 " left from the Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 > > So, I think I am going to ask my GI to put me on [VSL#3]. Any comments? > I gave VSL#3 a good try, and it did work for me to reduce my urgency and rectal spasms from chronic pouchitis and small bowel bacterial overgrowth. Even though my doctor formally 'prescribed' it, my insurance would not cover it, as it's seen as a nutritional supplement. It was very pricey. For this reason I switched back to my old faithful probiotic brand, Jarro-Dophilus EPS (originally recommended by my GI before the research on VSL#3 came out) just to compare the brands and see if I had similar results. When I increased my dose of the Jarro (I now take about 4 to 6 pills/day, depending on how my guts are feeling) I got the same results as the VSL--for a significantly cheaper price, even at the increased dose. I think the VSL is definitely worth a try. Ask your doc if there is any way he/she can obtain free samples for you--some docs can--and get a letter of medical necessity while you are there (which will help with the insurance, or at least a medical spending account, if you have that). If you find that VSL ends up being cost-prohibitive, I highly recommend trying the Jarro-Dophilus EPS. I hope it works for you--Be Well! Genevieve UC 1983, J-Pouch 1999, PSC 12/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 jms_758 wrote: > So, I think I am going to ask my GI to put me on it. Any comments? > It's probably worth a try if you can get your doctors to approve it. It sure has helped me! I'm post transplant, and the transplant docs have OK'd it for me, but you should probably check with yours. Both my family doctor and my GI recommended probiotics, but neither had ever heard of VLS#3 so I'm having to educate them about it. I'm hoping my insurance with pay for it... from the info I get from them it looks like they should, but it's hard to tell 'till I actually get a prescription run through. So I'm working with my docs to get one of them to step up and prescribe a product they've never heard of! One thing I did find is that if you want insurance to cover it, the prescription needs to be for VSL#3 DS. The DS stands for double strength and it is the prescription version. Some insurance (including mine) will deny coverage for anything that's available over the counter so if you have a prescription for plain old VSL#3 they might not cover it. The only difference between the two is that the DS has twice the bacteria (900 billion instead of 450 billion). One final note about price. VSL#3 is expensive, but on an equivalent dosage basis it's by far the cheapest probiotic I've found. For instance, the probiotics you see on the shelf at the drug store generally have between 1 and 10 billion bacteria per pill. VSL#3 has 450 billion! That means you'd have to take between 45 and 450 pills to equal the amount in one dose of VSL#3! And pricewise, you'd be spending many times the cost per equivalent dose. Flora-Q (another popular probiotic) for instance costs between $30 and $40 for 30 pills with 8 billion bacteria each... it would take 56 pills to equal one dose of VSL and cost around $70! Since VSL#3 comes in packets, it's easy to use part of one if you don't feel like you need that high of a dose, but from my experuiance I've found that I need the higher doses. I doubt the other probiotics would do much of anything for me. Right now I'm on two packs of VSL per day. HTH! athan No virus found in this outgoing message Checked by PC Tools AntiVirus (4.0.0.20 - 10.060.001). http://www.pctools.com/free-antivirus/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 At our very first PSC Partners Seeking a Cure conference in Denver 05, there was a Dr. on the panel that recommended the VSL#3I bought it for my son who has also had a colectomy and he tried it a couple of time but he hated that it was a powder.So he ended up taking Flora Q instead that comes in a capsule. We also learned about this probiotic from another PSC/UCer who attended that conference. My son has been taking the Flora Q ever since. It is also bought without a prescription. For those of you deciding on whether or not to come to the conference, this is one reason why you should.Information is shared by the experts as well as those living and coping with this disease. I found out something new at every conference and I wouldn't miss it for anything. I highly recommend it to everyone.LeeHey Folks, here is the status:49 Yr old male feeling great except for colitisPSC DX 92UC DX 97Liver TX June 2004UC returns, February, 2005Colectomy, well most of it anyway, (10" left from the descending) Jan 2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 I just want to say that this difference in the probiotics was pointed out to me at the conference which was why theexpert recommended it. But, since my son wouldn't take the powder, I figured better to have 8 billion than no billion !Now the Flora Q comes in double strength at 16 billion. Still not up to the strength of the VSL#3.Just be aware that the VSL#3 was the recommended one. LeeOne final note about price. VSL#3 is expensive, but on an equivalent dosage basis it's by far the cheapest probiotic I've found. For instance, the probiotics you see on the shelf at the drug store generally have between 1 and 10 billion bacteria per pill. VSL#3 has 450 billion! That means you'd have to take between 45 and 450 pills to equal the amount in one dose of VSL#3! And pricewise, you'd be spending many times the cost per equivalent dose. Flora-Q (another popular probiotic) for instance costs between $30 and $40 for 30 pills with 8 billion bacteria each... it would take 56 pills to equal one dose of VSL and cost around $70! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 I thought I saw somewhere that the VSL #3 comes in pill form also now. Do you know if that is right? I know Todd will not do a powder either. Joanne (mom of Todd) Sent from my Verizon Wireless BlackBerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 jgrieme@... wrote: > I thought I saw somewhere that the VSL #3 comes in pill form also now. Do you know if that is right? Yes that's correct. I think it takes four VSL pills to equal one packet. I think the price for the two forms is pretty similar too. I did find that if you mix the powder with food (especially yogurt) you don't really notice it. I bet most kids wouldn't know it was in there if you just gave them a yogurt cup with the powder well mixed in. But then you never know what kids will taste and object to! athan No virus found in this outgoing message Checked by PC Tools AntiVirus (4.0.0.20 - 10.060.001). http://www.pctools.com/free-antivirus/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 i started taking vsl#3 and realized it has a bit of an orange flavor. i mix it with orange juice and can't even taste it!-rachel > > I thought I saw somewhere that the VSL #3 comes in pill form also now. Do you know if that is right? > Yes that's correct. I think it takes four VSL pills to equal one > packet. I think the price for the two forms is pretty similar too. I > did find that if you mix the powder with food (especially yogurt) you > don't really notice it. I bet most kids wouldn't know it was in there > if you just gave them a yogurt cup with the powder well mixed in. But > then you never know what kids will taste and object to! > > athan > > > > No virus found in this outgoing message > Checked by PC Tools AntiVirus (4.0.0.20 - 10.060.001). > http://www.pctools.com/free-antivirus/ > Quote Link to comment Share on other sites More sharing options...
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