Posts Tagged ‘learning’

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Hot Water Bottle Syndrome

February 26, 2010

About a year into experiencing mysterious digestive symptoms I also noticed that my belly was always kind of red and blotchy. The blotchiness doesn’t exactly come and go, but it does fluctuate in intensity, and it has a very specific shape – a lacy red ventricular pattern under the skin, like latticework. It is not raised, it doesn’t itch, it doesn’t hurt, etc. I never used to think of it as particularly noticeable to anyone but myself and my husband; I wore a 50’s style bikini to the pool a summer ago and I even took a burlesque class last fall and was completely more embarrassed about my flabby triceps than my blotchy belly. I have noticed however that it has gotten worse and worse in the past few months. I have wondered in the past if it had to do with using a heating pad so often; when I am not feeling well I even sleep with one, but it never seemed to go away, even in the months where I felt good gave the heating pad some much needed rest.

I asked my endo what she thought of it and she said she thought the surgeon who removed my gall bladder may have snipped something he wasn’t supposed to and screwed up the vascular system just a little bit. That sort of made sense but I wasn’t sure. I made a mental note to ask my new holistic, whom I love, but I forgot! I did some research on my own and thought that it looked a bit like livedo reticularis, but this condition usually occurred on the legs.

Last night was the first night in a while that I slept with the heating pad through the entire night – easy enough to do with the window cracked and the chill of the Blizzard of 2010 streaming in! I dreamed that I burnt my stomach and when I woke up, I actually had. Ouch! Then I noticed in the shower that the lacy pattern was bright, bright red, more pronounced than it had ever been! My husband immediately found a picture of something called Erythema ab igne online.

Erythema ab igne, or “Hot Water Bottle Syndrome” happens often after repeated exposure to heat or infrared radiation. Digging around through google image search and the online catalogue of many skin condition image collections, Erythema ab igne is the only one I’ve ever seen as frequently on the backs and bellies of patients as on the arms and legs. I am beyond sure that this is what is going on. I suppose I have been using the heating pad way too much, on too high heat. I think I have even desensitized myself to the heat because I recently bought a 2nd heating pad as the first one just wasn’t getting hot enough for me anymore. Really I think its probably common sense not to sleep with a heating pad but then again chronic pain is chronic pain and you do what you can to deal with it.

Needless to say I’m a little distraught. As if I haven’t been feeling ugly enough with the butterfly rash redness and the weight gain.  Worst case scenario, I must get it looked at and possibly biopsied to ensure that I don’t end up with skin cancer.* I often spend my entire day at work just dreaming about getting home and lying down with the heating pad. A far cry from dreaming about getting dressed in my cutest outfit and going out dancing with my friends, but c’est la vie. There is nothing else that makes the pain go away and it even helps with the bloating. Now I don’t know what I will be able to use for comfort except for castor oil packs, which will hopefully help.

Click here to read about a boy Chron’s Disease who has given himself erythema ab igne with a heating pad.

*I realize this sounds a little like the words of an alarmist who does nothing but spend way too much time diagnosing herself online but seriously. Wake up and look like this one day and WTF would you do?

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Vitamin D

January 9, 2010

Back in mid-October I started supplementing with Vitamin D. The transition from something I was toying around with to a daily, regular supplement was a quick one. I ran across this old article from 2003 that stated that “93 percent of all subjects with non-specific musculoskeletal pain were vitamin D deficient.”  That’s a pretty staggering number. The same week that I found that article, I had a discussion with a friend who had recently found out about her own deficiency, and she encouraged me to continue supplementing, and to determine my own dosage based on symptoms. I asked my doctor for a Vitamin D test  when I saw her at the end of the month. She looked at the results of an older metabolic panel and said that my calcium levels were fine so there was no need to test for D.

I continued to take the D, and the more I read about optimal levels, the more I took. I also didn’t notice immediate relief from the pain, bony aches that came and went and migrated through my limbs, back and pelvic area, so I kept increasing my dose, up to  around 7,000 iu daily. Right around Thanksgiving I felt the bone aches coming on one day, and they lasted about 2 or 3 days. But the good news was that in getting them back I realized that I had been without them for weeks! I realized I had skipped a few days of the Vitamin D, so I upped the dose again, to where I was taking between 7,000 – 10,000 iu daily. This is equivalent to about 50,000 iu weekly, which is the dose most often prescribed to someone who is found to be deficient. I am currently pain-free and at this point I am fairly convinced its from taking the Vitamin D on a regular basis.

I ended up getting that Vitamin D test after all as well; since it was in with the battery of tests my holistic MD requested. My level is 39.5 ng/mL. Definitely not in the toxic range! There doesn’t seem to be a consensus on the optimal level of serum Vitamin D; my lab’s reference range goes from 32 – 100 ng/mL. Dr. Mercola says that anything under 50 ng/mL is deficient! So clearly my nearly three months of mega-dosing have not been harmful to me. If anything, I still need more Vitamin D so I’m going to continue to take my large daily doses.

Other benefits I’ve noticed: back in July I noticed that I couldn’t feel my big toes. I realized today that I can feel them. Also, in the midst of really feeling incredibly unwell and experiencing every single textbook symptom of hypothyroidism except for my hair falling, I have long, girlie fingernails for the first time in my entire life. I have been a nail-biter all my life. The few times that I have tried to grow them out, the process is painfully slow and I end up breaking them almost right away. I got acrylic tips on Halloween because my husband and I dressed as Zuul and Vince Clortho and I wanted long, red Sigourney Weaver nails. Two weeks later the tips came off and I was pleasantly surprised to see that my left thumbnail was, while still short, beginning to resemble a real adult woman’s thumbnail. I promised myself not to bite it, and well now its very long!  I’ve been letting the rest of them grow too; protecting a few at a time, and I am beyond halfway to a lovely set of nails!

My only concern is that since August I’ve noticed that my face is often flushed in a mylar or butterfly rash pattern. I don’t attribute this to the D, but its been getting more noticeable lately and I need to figure out if something I’ve been taking or eating is doing this to me. Otherwise, I would call this a victory for Vitamin D and one small part of the chronic multi-illness mystery solved, at least for me.

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post xifaxan / on erythromycin

October 23, 2009

A quick post to update…I finished up the Xifaxan on Monday. I have been taking Erythromycin at night before bed per Dr. Pimentel’s June 2009 study in Gastroenterology & Hepatology. My pharmacy only had 250 mg tablets, not the suspension of 50 mg specified in the study. There was an afternoon of discussion in the Yahoo group over dosage/tablet cutting, etc. and whether or not it would be safe or effective to take the Erythromycin in this way. Frustrated, I wrote to Dr. Pimentel to ask his take; he wrote back right away and said cutting the tablets in quarters should be just fine. (I had the wrong address before!)

I’m not feeling god awful anymore but it is really too early to tell what I’m feeling. I get really atypical results with the Xifaxan; feeling pretty crappy while I’m on it, then getting great relief but not in the same manner/timeframe as others I see posting about their experiences on ibsgroup and other places. Except for the course I took in August, which really knocked my socks off, and which the effects of dissipated nearly as rapidly as they came, I usually need a lot of time and strict diet after the course to feel really well. So not feeling so amazing right now is not really important, but not feeling terrible is a pretty good sign. I’m still eating Atkins, and dutifully taking the Erythromycin at night. I’m trying to stick to three or four meals a day, and not take snacks, so that the cleansing wave of the small intestine has time to do its thing. I’m still not taking probiotics in any form (I hope I didn’t confuse anyone when I mentioned my “kefir/yogurt fast” in the last post – I meant I was fasting FROM these foods.) I took a closer look at the digestive enzymes I’d been taking and they had 3 strains of “beneficial bacteria.” Luckily I had stopped those during the Xifaxan (mostly out of laziness!) I’m picking up some ox bile today and I will use that along with the HCl with meals.

I had a conversation with a friend last night who is studying nutrition about vitamin D. I had no idea but she had also been having the odd, migratory, musculo-skeletal, or “bony” pain that I have been suffering from. She had also experienced cramping and curling of the hands and fingers. This is something I experienced back in 2007/2008 whenever I would finish my workouts, but it would happen in my toes and feet. She was diagnosed with severe vitamin D deficiency this year and says that months of supplementation have nearly turned her life around. I’d already started supplementing only this week but I think I need to up my dosage a bit. I’m also looking into Calcium D-Glucarate. I could really use a good education in micronutrition. I tend to find vitamins and minerals about as confusing as digestive enzymes. Really, I suppose the only thing I do know a lot about is antibiotics. This is actually a great realization to have; one which makes me very happy. I stated in a recent post here that I was growing really uncomfortable with the amount of information I had collected and the amount of knowledge I had amassed about SIBO, since I seemed to be one of the only ones I was coming into contact with who had put in the hours doing the research. Lately however some of the discussions in the yahoo group are incredibly enlightening for me and I no longer feel like a walking encyclopedia of SIBO info. Because I long for knowledge and lately I’ve been able to gain so much, I feel I’ve become more open to some of the knowledge and information that has been out there all along that I may have glossed over or considered irrelevant for one reason or another. Which is a great thing really. It’s very nice to have one’s eyes opened. And I will update when I know more about how things are working for me.