My insurance company recently started covering VSL #3 DS so I've been lucky enough to get a 90 day supply at a low cost. I started taking the VSL #3 slowly--1/2 a packet once a day in the evening right before going to sleep.
My Ulcerative Colitis has been under control for quite a while now due to avoiding my food intolerances and taking the VSL #3 just seemed like a good idea in terms of maintenance and replacing all the 'good bacteria' I probably lost over years of taking antibiotics for acne. Long story short, I'm taking the VSL #3 more as a preventative health measure than to help specifically w/ UC.
The first 2 days of taking the VSL #3 I didn't notice much of anything. However, in the ensuing days I would wake up throughout the night after taking the VSL w/ a terrible scalp itch and inflammation. Initially, I just passed it off as a coincidence and continued to take the VSL, but the scalp itch and inflammation continued to get worse and began to break out in more pustules and raised bumps on my scalp. My acne, which is always difficult to control, also seemed to get worse. These symptoms usually, though not always, are associated w/ getting 'glutened' or eating any of my other intolerant foods. However, other than the VSL, in this case I know I wasn't ingesting any damaging foods.
My questions then for everyone are: 1) Do you think this could be some kind of 'die off' reaction from the introduction of the good bacteria in such large numbers? 2) Supposedly, VSL #3 DS is gluten and dairy free, but do you think I could be reacting to trace amounts? It does contain 'maltose' but the manufacturer still says the product is gluten free.
My UC is pretty well under control, but I'm still struggling to gain any weight. I'm 6'1 and 150 LBS. I assumed from reading positive reviews of VSL that it could potentially help w/ absorption and intestinal healing, but thus far I'm afraid to continue taking it given the reaction. I also hoped it would help heal my acne and pre-existing scalp rash problems from the inside, but instead it seems to have made both worse. On the bright side, I haven't had any intestinal complaints as a result of taking the VSL, but the other symptoms are more than troubling.
Any advice or stories of experiences w/ VSL #3 DS or probiotics in general would be much appreciated. Thank you.
Negative Reaction to Probiotics
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Negative Reaction to Probiotics
"Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game." ~Voltaire
NJ,
I'm sorry you've had a return of symptoms. I believe that die-off symptoms would take longer to show up... and I know that if I had symptoms like that, after adding something new, I would drop it like a hot potato even if I could not figure out which ingredient was the culprit. (Maybe temporarily - but at least for now.)
If you stop the VSL #3 and your symptoms subside, you'll know for sure. If you stop it, and there is no improvement, you can look for another suspect, but it sounds as though you are thoughtful and methodical enough to know already. If your symptoms are caused by something else, I would still wait to add the VSL#3 back until you have the other irritant figured out and removed, and the inflammation calmed down. (Because I am a control freak... maybe?)
Your symptoms may not be specific to gluten, but they are extremely suspicious; you may be especially sensitive to trace amounts of products that are 'clean' enough to be called gluten-free, OR you may have an additional intolerance you are about to figure out. Either way - for sure it's great you haven't had a digestive nightmare, but your keen detective skills are definitely pointing to a suspect.
I have had both positive and negative experiences with probiotics, for myself and my late mother. I have had both positive and negative experiences with the *same* probiotic. It's kind of a dark art, in my opinion... and when you have active symptoms and inflammation, I'm all about "when in doubt, throw it out" (did I mention I'm a control freak?)... I'm currently using Saccharomyces boulardii on a hunch; it helped my mother at one point, made me sick and one point, and may be helping now, but isn't hurting in any case. I have used others in the past, but am avoiding anything that might be on speaking terms with dairy, because me and dairy are OVER for good.
Hope this is helpful - I am trying to leave my idiosyncracies (personal and digestive) in plain view so you can draw your own conclusions, and not just take what I saw at face value
Truly hope your symptoms and inflammation are gone ASAP,
Sara
I'm sorry you've had a return of symptoms. I believe that die-off symptoms would take longer to show up... and I know that if I had symptoms like that, after adding something new, I would drop it like a hot potato even if I could not figure out which ingredient was the culprit. (Maybe temporarily - but at least for now.)
If you stop the VSL #3 and your symptoms subside, you'll know for sure. If you stop it, and there is no improvement, you can look for another suspect, but it sounds as though you are thoughtful and methodical enough to know already. If your symptoms are caused by something else, I would still wait to add the VSL#3 back until you have the other irritant figured out and removed, and the inflammation calmed down. (Because I am a control freak... maybe?)
Your symptoms may not be specific to gluten, but they are extremely suspicious; you may be especially sensitive to trace amounts of products that are 'clean' enough to be called gluten-free, OR you may have an additional intolerance you are about to figure out. Either way - for sure it's great you haven't had a digestive nightmare, but your keen detective skills are definitely pointing to a suspect.
I have had both positive and negative experiences with probiotics, for myself and my late mother. I have had both positive and negative experiences with the *same* probiotic. It's kind of a dark art, in my opinion... and when you have active symptoms and inflammation, I'm all about "when in doubt, throw it out" (did I mention I'm a control freak?)... I'm currently using Saccharomyces boulardii on a hunch; it helped my mother at one point, made me sick and one point, and may be helping now, but isn't hurting in any case. I have used others in the past, but am avoiding anything that might be on speaking terms with dairy, because me and dairy are OVER for good.
Hope this is helpful - I am trying to leave my idiosyncracies (personal and digestive) in plain view so you can draw your own conclusions, and not just take what I saw at face value
Truly hope your symptoms and inflammation are gone ASAP,
Sara
p.s....
I think if you get healthy, your weight will gently float to where it belongs. If you get heavier, but not healthier... YIKES, that wouldn't really be progress. Since you're definitely under your typical weight, but not drastically underweight by the 'formula' theory (wrong as that is): if you're not still dropping pounds, you have a little time to get on track with weight gain. In my opinion, inflammation is the bigger emergency... always.
Hope you feel better fast,
Sara
I think if you get healthy, your weight will gently float to where it belongs. If you get heavier, but not healthier... YIKES, that wouldn't really be progress. Since you're definitely under your typical weight, but not drastically underweight by the 'formula' theory (wrong as that is): if you're not still dropping pounds, you have a little time to get on track with weight gain. In my opinion, inflammation is the bigger emergency... always.
Hope you feel better fast,
Sara
Nathan,
I doubt that the symptoms that you are experiencing is a Herxheimer reaction. It's difficult to say if it might be a dairy reaction, but your symptoms certainly suggest some sort of allergic reaction. Have you read the details on the VSL#3 site?
In addition to the bacteria, the flavored version contains maltose, natural lemon flavor, and silicon dioxide. The unflavored version contains only cornstarch, so apparently the double strength, (prescription), version contains the flavorings. The natural lemon flavor might possibly be the problem, but my guess is that you are reacting to the maltose. Manufacturers always claim that they remove the hordein, (the type of gluten found in barley), from malted products, but for some strange reason, we almost always react to them, despite their claims about how safe they are. The unflavored OTC version, (without the maltose), would probably be safe for you, but unfortunately, as you know, it's expensive.
Tex
I doubt that the symptoms that you are experiencing is a Herxheimer reaction. It's difficult to say if it might be a dairy reaction, but your symptoms certainly suggest some sort of allergic reaction. Have you read the details on the VSL#3 site?
http://www.vsl3.com/about-faq.aspCan I take VSL#3® if I have an intolerance to dairy products?
Some dairy ingredients are used in the culture medium but are removed during fermentation and concentration. There might be trace amounts at very low levels and, for this reason, VSL#3® is not defined as a dairy-free product but as a non-dairy product. Evidence suggests that probiotics may be useful in the treatment of patients with lactose maldigestion and lactase deficiency. Recent studies have demonstrated that lactose is better digested from yogurt than from milk by lactase-deficient individuals and yogurt ingestion by these patients is paralleled by reduced symptoms. Many patients confirmed that their intolerance was greatly reduced with the use of VSL#3®. If you are lactose intolerant, you may wish to start with a very low intake of VSL#3® to see how you respond before increasing the amount.
In addition to the bacteria, the flavored version contains maltose, natural lemon flavor, and silicon dioxide. The unflavored version contains only cornstarch, so apparently the double strength, (prescription), version contains the flavorings. The natural lemon flavor might possibly be the problem, but my guess is that you are reacting to the maltose. Manufacturers always claim that they remove the hordein, (the type of gluten found in barley), from malted products, but for some strange reason, we almost always react to them, despite their claims about how safe they are. The unflavored OTC version, (without the maltose), would probably be safe for you, but unfortunately, as you know, it's expensive.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sara and Wayne, thank you for the quick and informative replies. I'm going to stay off the VSL for a while until the inflammation calms down and then experiment by slowly re-introducing it. I had read the information on the manufacturer website about the dairy and lactose issues, but in general my reaction to dairy is much less pronounced and seems to be more delayed.
I think it is the maltose. The VSL #3 DS I have is the unflavored powdered version w/ the only added ingredients being maltose and silicon dioxide. The scalp inflammation, itchiness, and acne reaction most closely resembles the reaction I have when I consume gluten so that makes me believe the maltose, despite all the refining, is not gluten free. This is most disappointing because I would expect a prescription product to be gluten free and I really don't understand the need for maltose in a probiotic. I've even read, maybe incorrectly, that the DS version didn't always contain maltose. So why did they change the formula?
I'll keep you posted on my trial and error process. If anyone else has any thoughts or recommendations, please let me know. Thanks.
I think it is the maltose. The VSL #3 DS I have is the unflavored powdered version w/ the only added ingredients being maltose and silicon dioxide. The scalp inflammation, itchiness, and acne reaction most closely resembles the reaction I have when I consume gluten so that makes me believe the maltose, despite all the refining, is not gluten free. This is most disappointing because I would expect a prescription product to be gluten free and I really don't understand the need for maltose in a probiotic. I've even read, maybe incorrectly, that the DS version didn't always contain maltose. So why did they change the formula?
I'll keep you posted on my trial and error process. If anyone else has any thoughts or recommendations, please let me know. Thanks.
"Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game." ~Voltaire