Yes, I’m taking VSL #3 DS (prescription-strength). It is not covered under insurance (though maybe insurance company negotiated price helps a bit). My dosage is about half sachet per day. If I remember correctly, I calculated earlier that my cost is about $60 per month.
I use it with blueberries (as I read about several trials and studies that showed that certain superfood, such as blueberries, when used together with probiotics, give significant extra boost).
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Thank you, Ted. That’s much less than I take!
Yes, I’d read the same thing and take mine with blueberries also. It’s wonderful it has healed your colon.
Susan,
My daughter has psc and ulcerative colitis. After taking vancomycin for one month her liver blood work normalized, it took several months probably 6-9 months for her colitis to improve. She took the vancomycin in conjunction with ursodial and a low dose of mercaptopurine (for the colitis). Best of luck. Don’t worry about over-posting or being a burden, we are all dealing with this directly or indirectly so we empathize with your situation, this is about health, nothing else matters without it, so just know we are here to support and help. Good luck, David
David, I can’t begin to tell you how very much I appreciated these thoughts from you. Thank you. It gives me hope that the Vancomycin really could heal my colon (and by doing so, likely stop the low grade dysplasia from progressing). I don’t know where I would be right now without this group. You’ve been invaluable to me on many levels; knowledge, intelligence, experience, caring and the willingness to share. Deepest gratitude.
Susan
So for those using the First Vancomycin Kit, I just found out that it has been discontinued and they have something else similar called Firvanq. I need to get it for my son. Have you guys tried filling out a prescription for this? I am so afraid that the insurance won’t approve it 
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Leonora,
Hows it working out for you? Are you getting the new kit? My insurance (Humana), didn’t cover First Vanco for me but from what I read the change shouldn’t make a difference for you, if your company was already covering it.
David and others, I’m about to give up. My doctors are in no way advising me on my Vancomycin so I’m entirely on my own. I took First Vanco kit liquid for three months then switched to ANI. I’ve heading into a month on ANI and feel no better, probably worse. With what I’m paying out of pocket for ANI, I could build many tiny houses. I’ve been on ANI for a month coming next week and not sure whether to continue. 500 mg three times a day. Is there any chance the publication of the Cox et al material this coming summer will make a difference in insurance coverage? Any thoughts or advice on anything I’ve written today or previously would be most welcomed. My colonoscopy two weeks ago showed the same active ulcerative colitis as the previous, with the same patch of dysplasia, even though my UC symptoms/stools (quality and number), are improved. I’m just not sure what to do.
Deepest gratitude.
One large study indicates low dose is far more successful than higher doses. Another doctor is researching higher doses and goes higher and higher.
What to do what to do. Ted, I know above you said you’ve not heard of anyone going DOWN and doing well. Has anyone any knowledge of this?
How do you convince your primary care dr to let you get on vanco? My hepatologist says that my liver numbers are not high enough to do this. I don’t know why they think I should wait until things get bad.
Just seeing this post today. Have you been formally diagnosed with PSC? If you have, it would seem to me that Vanco is worth a try even if the liver enzymes aren’t “high enough”. I assume they are elevated above normal. Have you had an MRI to determine the extent of any damage? The point of Vanco is, if effective, it can slow or stop PSC progression. If taken early enough, where there isn’t any significant damage, stopping the progression can allow the liver to potentially repair itself. A primary care doctor is very unlikely to prescribe Vanco. That is asking him or her to get involved in treating a condition outside their realm. With PSC, you should be sure you are seeing a heptologist (preferably a transplant heptologist connected with a transplant hospital. I would seek a 2nd heptologist for a consultation and see if they are informed and willing.
That’s rediculous. It reminds me of what my first hepatologist said to me 33 years ago when I asked him what I could do to stop the progression of PSC. He said “just sit tight and wait for symptoms to emerge”.
Needless to say, I’ve done nothing of the kind.
Re: Vanco. I’ve been taking oral vancomycin for about five years now.
My ulcerative colitis is 90% healed (as seen on annual colonoscopies).
And my liver enzymes have remained stable.
I’ve asked my local gastroenterolgist to write my prescription which she has been more than willing and happy to do for me as she sees with her own eyes the results of Vancomycin.
Tom,
For what it’s worth, I’m almost 9 years post transplant and have been taking vancomycin now for over 2 1/2 years due to inflammation In my bile ducts. I just had labs on Monday and this is the first time in 2 1/2 years that my Alk Phos has normalized. I attribute that to the Vancomycin. I’m on 250 mg four times a day. I would find me another transplant hepatologist and get a second opinion and see if you can get on it if it’ll help you, it would be wonderful.
Mark