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Reged: 11/03/04
Posts: 48
Loc: Colorado
VSL#3 double strength Rx question...
      12/03/08 10:20 AM

Hi everyone,

I am posting this in the Crohn's/Colitis board because VSL#3 is the prescription only (double strength) probiotic for UC and Crohn's... can anyone help me with this? Here is my story:

I have had IBS-D/A for the last 8 years. I have tried everything... I am getting married and planning on starting a family and I realized it's not just me anymore. Being miserable on my own is one thing, but now my less than average quality of life is affecting my fiancé. The medications I'm taking as well as the diagnosis of IBS along with wanting to have children has given me my second wind to get to the bottom of this.

In addition to everything I currently do for my IBS which includes Heather's diet, 3 peppermint caps daily, 4 Bentyl daily, 4TBSP of acacia daily, hypnotherapy, Imodium, Phazyme, and seeing a chiropractor who has also treated me for possible parasites, given me bile supplements to raise my ph and help with gas, had me try eliminating gluten from my diet, and tried Neuro Emotional Technique, I finally saw some relief with eliminating gluten… I thought that maybe this was the problem all along and started to see some hope…

For the 10 days I went off of gluten I had 2 days of relief from stomach aches and symptoms. That was the first 2 days in the past 8 years so I was convinced that gluten was my problem. I did a lot of research and was well aware that the blood tests for Celiac have a high rate of false negatives, and found out that the gold standard for Celiac testing is an EGD Biopsy. When I was originally diagnosed with IBS 8 years ago, I had a negative Celiac blood test… so I thought that perhaps years back my blood test had produced a false negative.

I called my GI doc and asked to be tested again for Celiac. Once I went in for the appointment I met with a nurse because my doctor was busy, and through tears and pleading, and lots of explanation of starting a family and getting married, they finally agreed to several tests to try to get to the bottom of the IBS. They agreed to stool testing, another blood test for Celiac (full panel), Celiac gene blood test, Lactulose breath test, a colonoscopy, and an EGD with biopsy. So, I started eating gluten again and got the first few tests out of the way. Results came back- Celiac and Celiac gene blood tests came back negative. The nurse explained to me that there is a high rate of false negatives with the gene tests as well as the regular celiac blood tests and said I should go ahead with the colonoscopy and EGD. Then the stool tests came back negative as well. My usual frustration at always testing negative kicked in again… I know I am gluten sensitive but at this point I was actually HOPING for Celiac Disease… at least there would be an actual verifiable cause for all of this.

Then I spent half the day in the hospital doing the Lactulose breath Test… a week later I got a call from the nurse that I tested POSITIVE for bacteria and that it may be responsible for most if not all of my IBS symptoms. They prescribed VSL#3 Double Strength and advised me to try taking 1 packet a day for a week.. if no changes to double the dose, and then if nothing changed we would try Rixamifin antibiotics.

I went to pick up the prescription and found out that Cigna Insurance doesn’t cover VSL#3 DS, nor Rixamifin. Well, after 8 years of this I decided it was worth it to pay the $380 for the VSL#3 DS and put it on my credit card. There was a time when I wouldn’t be able to afford to just “put it on the card”, but I certainly can’t afford to refill the prescription when I run out…

After the first day on VSL#3 I noticed that aside from the horrible bloating and gas, as well as the chest pain I received from the gas, I didn’t get a stomach ache all day. Then no stomach ache the next 2 days… I am now alternating good and bad days but I’m only on day 5 of taking it… it is a godsend. Truly a miracle. This week I am still in disbelief that this could be the cure…

My question is this: Is there anyone who has had success getting coverage from their insurance company for VSL#3 (double strength)? If you've had success can you tell me what you did, how long the process took, and what insurance company you have?

This has been such a long struggle, learning that for 8 years I have had SIBO (small bowel bacteria overgrowth) and the doctors never tested me for it (it was only through my persistence that they said they’d test for it, and the Nurse told me she expected the result to be negative). It has been both a HUGE relief, and also seriously frustrating… If they had tested me years ago I could have avoided MAJOR ABDOMINAL SURGERY in 2003 for acid reflux…which I am now learning might have been caused by SIBO. So when I had my EGD for reflux, and they already knew I had IBS in addition to reflux, why did nobody think to test me for SIBO? Could I have avoided major surgery and the permanent effects it has had on my health? And why didn’t they do a biopsy back then to test for Celiac?

But I digress… how do I get my insurance company to cover VSL#3?

Thanks everyone!

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* VSL#3 double strength Rx question... stidesheaven 12/03/08 10:20 AM

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