Archive for December, 2009

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A new doctor

December 29, 2009

I mentioned a few posts back that I was going to see a new doctor, but I didn’t elaborate on the events that led up to that decision. If you’ve been reading since the summer you’ll know that I’ve not just been dealing with what are typical SIBO symtpoms for me lately, bloating, diarrhea and body aches; in fact, although I have been dealing with these symptoms, I would say that they have not been at their worst lately. Rather what I have been experiencing is crushing fatigue, crazy nightmare monthly periods, a heightened frequency of syncope, muscle weakness, and between August and October I packed on 20 lbs (14 of those by the end of September) and this weight isn’t going anywhere.

In October I had gone to see my regular doc at the health center, to see if she had any suggestions on the fatigue. It is important to note that I recently requested my entire medical record from the center and one of the many things I was surprised to see is that there is no mention of SIBO in there at all, outside of doctors writing things like “Patient says she has “S.I.B.O”” or “She says she has bacterial infections in her digestive tract…” This is because the health center never has offered the breath test for SIBO, so I had to go outside the facilities to find a doctor in NYC who did. Even my gastro who offers me Xifaxan mentions the SIBO by proxy in his files on me, since he isn’t the one who diagnosed me with it. So really I was starting kind of fresh with this doctor’s visit, and that was fine by me. Turns out I had an even fresher start than I imagined, as my own doc was out sick that day and I saw someone entirely new. I told her I was fatigued and that I had gained weight. She put in a few tests for me – a Comprehensive Blood Panel (CBC) and a TSH test (one of the thyroid? hormones.) I also had a standing order for a B12 test from my gastroenterologist.

Of course everything came back within range. Some noteworthy figures – my cholesterol has gone down again and now sits at 169. My HDL has increased from 75 to 85. My blood pressure that day was 98/64. And I had a TSH of 1.9.

I am no thyroid expert, so I’ve been doing quite a lot of research lately and from what I can tell this is a great number. In fact, even in the world of lower ranges, healthy people, and thyroid patients doing well on the right medication, 1.9 seems to be a number where many people feel great, although some need to be as low as 1 to feel good. Historically, however, it is somewhat high for me. Back in July of 2007, at a weight of 177, before I started eating meat and exercising and dieting, my TSH was 2.06. A year later I was 20 lbs lighter and it was down to 1.72. This June, at my lightest (and most energetic) it was down to 1.32. Now 6 months later its at 1.9. Its funny having to get into a brand new field of research; I really don’t know if this type of fluctuation is considered negligible or if it is actually important. All I do know is that I felt very differently at each of these times.

And of course I am completely aware of the TSH is worthless theory, and I don’t say I knock it, but I always try and give conventional medicine the benefit of the doubt to start with anyway. More on this later.

So all the test results were good, everything was within range and only one indicator – the G-GTP, or Gamma-Glutamyltranserase, was at the bottom of the normal range (normal being 7 – 51, my result was 8.) I believe that G-GTP is a bilary enzyme. My B12 blood levels were actually high: 996, where my lab’s top number is 948. So the doctor gave me a clean bill of health and then stared at me blankly. Of course I was upset. Why in the world am I feeling so fatigued? She told me I was probably getting too much sleep and to get out of bed earlier. I asked her about the weight gain and she said nothing at all and kept writing in her book. I asked what I should do about the painful periods and she scheduled me for a transvaginal ultrasound and a chest x-ray.  

So much for a fresh start. We called the new doc, scheduled an appointment and started saving up for his consultation fee. And I’ll discuss his initial findings and the tests he ordered for me in the next post.

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Vasovagal syncope of the untoward kind

December 11, 2009

One of the most embarrassing things to ever happen to me occurred when I was about 16 (surprise, surprise!) Although I didn’t have SIBO way back then I did have some intermittent IBS that came and went until years later when I started eating vegan. It was a party of some sort at my boyfriend’s house and I had eaten a lot of junk food and I started having stomach cramps. I went to the bathroom and that’s where the trouble really started. In addition to spasmy, crampy pain, I started to feel like I was going to throw up. I sat there on the toilet, having terrible diarrhea and getting more and more nauseous. I got hotter and sweatier and I started feeling like someone had dropped me into the bottom of a giant metal cup; all my hearing got tinny and thin. The next thing I know I was on the floor, and my boyfriend’s mom, head of Cardiology at a local hospital, was kneeling overtop of me. I had lost consciousness while on the toilet! She checked me out and I was fine. Cramps and nausea and everything else were gone. I cleaned myself up and that’s all I remember – I most likely lay down and went to sleep if I didn’t run back home out of embarrassment!

My sister took me to the doctor a few weeks later. (This would seem to be pretty par for the course for most folks, but actually going to the doctor when something weird happened to me would not be a theme in my life for the next decade or so.) He asked a few questions about what happened and although my boyfriend’s mom didn’t accompany us, she told us what to say. He did a few routine checks, found I had low blood pressure, and therefore pronounced me subject to vasovagal episodes, and bid us good day.

And it has happened to me ever since. Not a lot, but a couple of times a year most every year. And these past few years it has happened a few more times than that. In my life I’ve woken up on the bathroom floor more times than I’d like to remember (I used to think I had just lain down;) most usually on the bathmat, occasionally in the bathtub (with a bruised head to follow,) and once with my husband kneeling over me the same way my high school boyfriend’s mom did. “Oh I never told you I passed out?” I asked sheepishly…

To date in 2009 I’ve had 3 vasovagal episodes; 2 of them have occurred this week. Back in March I had the pleasure of passing out in front of a doctor; this meant I woke up to pure oxygen, which was quite pleasant! Both times this week when they occurred I managed to avoid full-blown syncope; the first episode was rather mild, but the second time was a bit traumatic. By now I’ve learned to just lie down on the floor when I feel it coming. But I was in the ladies’ room at work so I had to stay put on the toilet. And the prodome to losing consciousness just wouldn’t end. The nausea was terrible and I nearly completely lost my hearing. And something happened which I’ve never noticed before – I shook for about 15 seconds at one point, nearly falling off the toilet. I was worried that I was having a seizure but I was still awake. I asked my husband about the convulsing later, since he was actually present during the episode in the spring, and he said that I shook a bit before I collapsed then too.

I think the worst thing ever about my vasovagal episodes, besides the nausea, because I really can’t stand that part, is that they happen on the toilet. I don’t know what a blog about bowel disease would be without lots and lots of frank discussion of bowels. And years of blog posts, forum posts and doctor’s visits have definitely desensitized me to the topic. But before the SIBO, I wasn’t known as someone with a particular penchant for potty humor or conversation. I don’t really like to talk about going to the bathroom, I definitely don’t like to tell funny stories about the bathroom, and I have even shunned a good morning or goodbye kiss or two when just standing in the bathroom as I much prefer the sterility of the hallway. Yet here is where I like to pass out. Not fair.

It gets better. If you follow the link to the wiki entry on vasovagal episodes, you’ll see that what I have is actually even named after going to the bathroom – defecation syncope. That’s right. So, years of feeling awkward as a teenager/early twenty-something don’t get made up for here. Because I faint – how feminine of me, but I faint on the toilet. Awkward indeed! This is no gender-role-validating, subservient Victorian frail act, oh no, but rather something vile that I do behind a closed door. Turns out I would have to wait for several more years to come down with a condition with the word ‘intestinal’ in it before I would be made to feel girly by my own malaises*.

Of course, like many conditions from which I suffer, lots of ideas (but not all) about vasovagal syncopes center around the psychological aspect, and assume that triggers are triggering for emotional reasons, not necessarily physical ones, or at least that there is some emotion mixed in there somewhere. I do also pass out when I see my own blood. This keeps me from giving blood and when I get tattooed or have blood drawn for labs its essential that I don’t look at what’s happening to me. But just like defecation, I don’t have any particular emotional reaction to blood. This is probably hard for some people to understand, especially as they watch me go under, but I’m not squeamish. In fact, I used to be a big fan of gory movies. I don’t fear needles or bleeding. I don’t mind blood at all. Just like I don’t particularly like or dislike going to the bathroom anymore or any less than anyone else. But I cannot give blood or plasma and when I get a tattoo I have to make decisions about colors before we begin, and I have to trust the artist implicitly.

Here’s hoping to a relatively calm rest of the year…I’d like to end on no more than three!

 

*Sarcasm!

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Update

December 2, 2009

Something strange is going on with the blog; it looks as if everything past October is gone. This is probably only a temporary snafu, but I was thinking of posting anyway, so this update will serve as a test and a real post I suppose.

Yesterday I had flu-like symptoms, and when I took my temperature, it ranged from 95.5 – 96.5 F. Today my temperature is higher but not feverish, but I am home sick all the same, coughing and sneezing and sweating and as an added bonus I have menstrual cramps. Yesterday, in my non-feverish yet totally flu-like haze, I bought an Atkins bar. The small amounts of malitol and sucralose did not bother me as they have in the past. However, chocolate is not allowed on the low-histamine diet. The mistake caused me to consider throwing in the towel on the low-histamine diet, which has not brought about any changes. It had only been three days, but the person in the Yahoo group felt great after 3 days and began to add in the allowed carbs. I kept up the show, however, and just skipped out on food for the rest of the  work day, not being too hungry anyway. I came home and had a few ounces of lamb and a half cup of homemade mashed potatoes for dinner. I also ate a small amount of peanut butter and ricotta cheese and pecans. I was so bloated and miserable all night.  Today I started my period so whos to say what is and isn’t making me ill, between the flu and that.

This blog gets a lot more traffic when I’m feeling well. Of course people want to know how to be cured and how to feel better. I really want to know that. I’m tired of the things I want to be doing falling just out of reach. I’m tired of being someone who makes an effort to be healthy but keeps falling ill. With little colds, feeling flu-ish, etc. I have finally banished the migratory musculoskeletal pains, “bone pain” as I used to call it, and I think this is thanks to mega-dosing with Vitamin D. I’m super grateful that they are gone; the pain was really debilitating at times. But I am still dealing with the bloating and distention, the abdominal cramping, the weight gain, the sneezing and runny noses, and now dizziness and achiness. I am going to see a new doctor towards the end of the month. We have to wait until then because he is outside the union healthcare system, which means I will have to pay out of pocket. He is a holistic doctor, and some of his patient testimonials talk about how he helped people fix their subclinical thyroid and yeast issues. I have held some pretty firm anti-candida views in the past. However, at this point I’m fairly willing to believe that if bacteria can overgrow, then yeast can too. And I’m nearly positive that my thyroid is busted. Test results be damned. So I’m hopeful.