Saturday, October 8, 2011

So, are probiotics evil?

Ever since I did a lot-lot-lot of reading about vulvodynia and digestive problems a few years ago, I've been coveting VSL #3.  It's a heavy-duty probiotic used for a range of digestive problems, including IBS, Crohn's, and colitis.

You can get it over the counter, which I did, but the manufacturer recommends seeing a doctor because it's so powerful.  (Much cheaper to try it myself.)  It has about 110 billion live bacteria per capsule, compared to 5 billion in Fem-Dophilus and 50 billion in Ultimate Flora Vaginal Support, probiotics I had tried out before VSL #3.

The recommended dose of VSL #3 for IBS is lower than for other problems -- I think it's 2-4 capsules per day.  I started off with one capsule per day, expecting to experience something explosive within a few days.  I didn't, so I inched my way up to two capsules, then three or four over the course of a month.

Early on in this trial, I woke up with what felt like a UTI: bad burning centralized around the urethra that gets much, much worse upon peeing.  I bombed my urinary tract with Cystex, cranberries, blueberries, and water, and decided to wait it out.

I waited for one week, then two.  Finally, since I hadn't died yet, I figured I didn't have a UTI and that my vulvodynia was flaring instead.

The pain was very similar to the pain I had last winter, when I was sitting all the time and stressed out about personal problems.  The pain was also similar to how my pre-period pain feels sometimes, so I thought maybe I was having a month of odd hormones.

As I went up on the VSL #3, the pain got worse.  Sitting, walking, and peeing became hellish.  I spent a lot of time lying in bed trying not to move.  I took lots of Neurontin and Naproxen.  At work, the pain just got worse and worse the more I walked around, and I'd hardly be able to sit down by the time my shift ended.

As I looked back over the month, I couldn't think of a single thing I was doing differently.  It took me quite a bit of thought to realize that the only thing that had changed in my routine was that I'd started taking VSL #3.  Really, who would think that probiotics are causing them coochie pain?!

A few days before my period, I skipped a day of VSL #3, and my pain was much better.  Then I tried taking only one or two capsules, but my pain got worse again.  I stopped the probiotic altogether, and my pain actually went DOWN for the couple days before my period started.

The one benefit I think I've seen from taking VSL #3 is that my cooch isn't hovering on the yeasty side of things anymore.  But I don't know that I'll ever find out if it could help me more -- the pain was some of the worst I've experienced, and VSL #3 is one of the only things that's caused me that level of pain, along with antibiotics and too much sitting.

I don't know what to make of this.  Did my urine become really acidic?  If so, why did the pain get worse when I moved or sat and not just when I peed?  The only digestive change I saw was that I got MORE backed up, and I finally started pooping regularly once I went off the VSL #3.  Is it an allergy?  Do my bacteria and the VSL intruders just not get along?

I've read a lot about "yeast die-off symptoms" and other symptoms from changing one's diet from bad to good.  So if the pain was a side-effect of a "cleanse"...why was it so similar to antibiotic pain?!  Why didn't I get the same pain when I went vegan or used other probiotics or took weekly doses of Diflucan?  If I was experiencing a "cleanse," how long would the pain last?  Can I hold my breath that long?

This experiment is particularly frustrating because I know if I took it to a doctor, his eyes would glaze over and he'd equivocate because he wouldn't have an answer and wouldn't be willing to help me find one.  I have pre-emptive frustration with the doctor I tell this to.  Which might not be any doctor.

There are so many theories out there.  A woman claims that X cured her.  Another woman, Y.  Z, A, B, C...  I know all of our bodies are different, but I have a hard time believing that there are so many versions of vulvodynia.  I'd think that for a given set of symptoms, the possible causes would top out at like 4.  The more I think about it, the more frustrated I get, so I've taken to not thinking about it at all.

8 comments:

  1. You know, it's very interesting this yeast phenomenon. When it very often feels as though there may be a yeast issue and in fact, looks like there's a yeast issue, there really might not be.

    My last gynecologist, I emphasize last as he's been fired since, took a culture when I pressed him to do so after he insisted I had a yeast infection. Given all the pain I was having (yet to be dx'd pudendal entrapment) I wasn't about to believe such pain was from a yeast infection, not to mention that I was 40 years old and had never, ever had a yeast infection in my life. I wasn't buying it, so I insisted that he culture the matter and sure enough he comes back in and says there's no sign of yeast at all and in fact he sees only good bacteria.

    So perhaps you're not dealing with classic yeast per se and that's why the probiotics aren't really helping, but in fact hurting. They may be working on something else, something healthy, as there may not be a yeast problem to "attack" per se, despite what you feel and see. And believe me, I get it. It feels, looks and acts like a yeast infection, but I've come to believe when it flares up it's just some other sort of hyper cleaning of my "oven" that's gong on for whatever reason. Probably neurological in origin.

    Anyway, just some thoughts. By the way, that gynecologist, AFTER he tells me there's no sign of yeast and that I in fact have only healthy bacteria he still writes me a script for anti fungal yeast medicine to be applied vaginally. Ridiculous. I never filled it. Why in the world would I pump something up there that's supposed to deal with yeast when I don't have a yeast issue? I even asked him this and he said: well, it can't hurt. I felt like saying "get yourself a vagina for a day and let me hear you say that again." Ignorant. I don't see him anymore. My new guy is great. He's a pelvic pain specialist and totally gets it.

    As far as probiotics go, I take simple acidophilus and bifdus. Seems to be just right for me. Helps my insides a great deal and if I stop taking it for a few days I really feel it GI wise.

    jenji

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  2. I meant that the uber probiotics may be detrimental and attacking healthy stuff, not that the gentler one couldn't be of some benefit to you. That's why I use the gentler kind; the big boys beat me to a pulp.

    jenji

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  3. jenji, I've read that different people have different bacteria...I should probably look that stuff up again...but anyway, one article was about how a study showed that skinny people have different bacteria than overweight people. Ha! So maybe, as a chronically skinny person, I have some non-standard bacteria keeping me thin. Or maybe those who are overweight have the non-standard bacteria. I don't know. I'll have to look it up again.

    I'm now taking one capsule VSL #3 every other day. I've eaten some sugar the past week, which would usually make me itch, but it hasn't bothered me. That really impressed me. I don't avoid ALL sugar anymore (I did for a long time, but I no longer have the willpower after it didn't fix all my problems...), but I usually don't eat much. For the past half-year or even year, slight indulgence would make me itchy, but I haven't had any sign of that.

    So maybe it's a yeast issue and my tum-tum is just very sensitive. Maybe reducing the VSL dose will make it tolerable for me. I'm thinking I'll try taking one capsule every other day until the bottle runs out and then try what the guest poster wrote about in the blog post that follows this one (Bioceuticals SB Floractiv).

    Thanks for reading & writing! If you ever want to write a guest post on my blog, you're welcome to.

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  4. Hiya.

    Well, that's interesting that your guest blogger should mention Saccharomyces cerevisiae. I had some blood work done and I came back with a positive marker for inflammatory bowel disease. ASCA test looks for Saccharomyces cerevisiae antibodies in the blood and Saccharomyces cerevisiae is basically stated: brewer's/baker's yeast. Yes, it is a "useful" yeast, but for some of us, it is not. And so brewer's/baker's yeast makes my immune system set off something fierce. Having this marker is usually indicative of either Crohn's Disease or Ulcerative Colitis; it can also happen for some with celiac disease. As a chronically skinny person myself I have no doubt that my particular system keeps me skinny because of some sort of bacteria/yeast and/or absorption problem, the latter is evident as I have a myriad of low levels of vitamins and minerals: ferritin, iron, calcium, Vit D, Mag, creatine etc.

    I suppose I'm kind of babbling, but it just seems to me that all of us have something similar and that we can somehow connect the dots by looking at other people's experiences. This is mine.

    Despite taking probiotics and eating GF for over two years my exhaustion is still so unbelievable that some days I can hardly function. It's clear to me that my immune system is attacking something (clearly Saccharomyces cerevisiae to start) and needs a break. What's really interesting is that for years I would smell yeast and I couldn't figure it out. Was it me? It was as if my hair and my sweat smelled of yeast; my clothes after wearing them. I would ask people if they could smell it and they would say no, but when it happens it's unmistakeable for me. If I eat a ton of sugar, butter or bread it kicks back up again. Since I've been GF and staying away from too many sweets and/or butter, I rarely have this problem or sense this problem anymore. If I do, I cut the sugar for about a week before slowing introducing it back. I'm more than sure it's a gut thing. I've been to a couple of GI specialists and they both seem to think that I may have a form of Crohn's, perhaps pre-crohn's, but that given my progress GI wise since going GF and probiotics, the invasive tests used to diagnose said condition is "not worth the risk right now." I kind of agree, I've had enough things shoved into places I'd rather not have had breached. My GI function is a thousand times better than it used to be and it's been wonky since I was a very young child. It finally started to let up like I say, after GF and probiotics.

    It's all just so convoluted, involved and confusing.

    Thanks for the guest blog offer. Maybe I will take you up on that sometime.

    jenji

    ps: you know what annoys me to no end? The fact that doctors should be connecting these dots and solving these problems for us and they just don't care to if it's not a textbook case of anything. Very annoying.

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  5. Hi. Did you have anymore insight into this? Could it be oxalate dumping? I was thinking about trying VSL #3 for vulvar pain, but your post makes me wary...

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    1. No, I haven't come across anything that could explain why VSL #3 messes with my pain so badly. But Bactrim (antibiotic for UTIs) does too, and as antibiotics mess with gut bacteria, maybe VSL #3 is just not right for my particular makeup. It's worth a try as it is very powerful, and you'll know soon enough whether it's going to be painful. But you have to spend money on it first :/ Maybe the company offers samples or smaller quantities?

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  6. By the way I am male and have had similar issues from taking CytoFlora, which is a tincture of lysed probiotic bacteria.

    I have always had pelvic muscle tension, and it requires internal physical therapy (trigger point / myofascial release) to keep it under control. I overdosed on CytoFlora one day and could barely walk within two days. The effect persisted a long time until I saw the physical therapist. It has happened to me now three times over the years. I can't say I have ever come across anyone who knows why this can happen.

    I think that the junction between the colon and the rectum, right at the second fold of the rectum, is connected to the pelvic floor in ways that the PT literature doesn't describe. I think that the colon is tense (due to some unknown reason related to how much probiotic you took - VSL3 is very strong stuff), but as it is involuntary, I think the symptoms of trigger points appear at the boundary of the involuntary and voluntary muscles, which is right there at the second fold (I think). That is my theory.

    The funny thing is that for me, at a smaller dose CytoFlora is the only thing which actually reduced my pelvic muscle tension issues - yet at a larger dose it magnified them considerably.

    I would say if anyone offers you a specific cause as to what's happening in your colon why you are experiencing pelvic muscle tension from VSL3, take it with a grain of salt. They probably have no idea what is going on in there.

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    1. This is an amazing comment! This makes so much sense. I wish we could talk more about it. madpeachblog AT gmail if you want to email.

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