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A Year Without Cake Reviews a Website

July 13, 2010

About three weeks ago I got something interesting in my Google alert for SIBO. Not as great as the time I found Non Nosher’s blog, but still pretty good. On a Cure Zone forum, someone had posted that their IBS and SIBO was gone. The teaser text in the body of my email read, “Hi all, please visit my public site for more information regarding the natural remedy for IBS and SIBO. Mine was cured. This is not a scam!…”

So of course i clicked over, pretty sure it was a scam, but still… Only I found that the message had been deleted by a moderator before I could get to it.  I got it in my mail again the next day; different forum, same result.

So that’s all it took – two Google alerts and I bit. I had to know what was behind this.

This site tells a brief story about a guy with SIBO who tried lots of remedies but couldn’t find lasting relief.  And then suddenly he stumbled upon a natural remedy, and he was cured. And now he’s offering to tell you all about the natural remedy – for a $10 donation. (It was $8 when I donated.)

Yes, that’s right. I donated. Not because I thought $8 would buy me a cure.  But because I needed to know exactly what was going on!

And now I know! Here is my interpretation: Send in your donation. Wait 24 hours. You will get an email; it is well-meaning enough, I suppose, in which he will tell you what worked for him. That is, he will tell you what that substance is. He claims it is hard to get. But hey, don’t worry! If you send him another $8 (probably $10 now,) he will tell you EXACTLY where to get it. That sounds fair, right? Wait, what’s that? It totally doesn’t sound fair? Yeah, I know. That’s why I’m publicly denouncing this scam right now.

I know the effort that goes into being sick and trying to get well; this is all I have been doing for four years now. Do you know what I will do when I happen to come across something that makes me feel better? I’ll write in my blog about it. That’s it. The end. I’m not trying to be a jerk here; but a person who tries to profit off of a community they should be…actually communing with…is not cool. I sort of get it; if he were out there on the forums, and in my group talking about his “natural cure,” he wouldn’t be making any money.

So His decision to try and sell his “secret” is his own; I suppose I can see why he thought it was worth a shot. But he might have done his research first; this community (people with SIBO, IBS and Celiac, not to mention well-researched bloated folks) has done nothing for the past four years if not surprise me with its vast intelligence. This must be the reason why today, three weeks after i first encountered Mr. Adios, his posts are still coming to me in my Google alerts, and the posts are still removed by mods before I get there.

That’s my review. Two thumbs down. Don’t give this person your money. Spend it on yourself instead.

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A week without you; thought I’d forget…

June 26, 2010

…Two weeks without you and I still haven’t got over you yet!!

Summer is like the biggest test of my humanity ever. Ever! Always has been. And even as I age well, become more human each year, the realness of my own mortality bringing me closer and closer to a true appreciation of blinding hot east coast humidity, and making me friends with my own worst features (sweating disorder, too fat thighs and upper arms, too…burn-y skin and an overall paleness that borders on pasty,) summer gets stronger every time. What I mean is that I haven’t ever really liked summer. As a fat, sweaty kid, it was always the worst part of the year. Hanging out at the community swimming pool, getting made fun of by the skinny kids. Whatever. I grow older and I get to like it more. Because I have to; summer is just a part of life without cute coats.  I deal a little better with my own shortcomings; I get fitter and thinner and I adapt and cut my hair; I grin and bear it. I buy a bathing suit and lay in the sun.  And then when I think it’s all OK and I’m totally normal I get Rosacea. And now I have to spend all summer getting asked why I’m so red, did I get too much sun?

I did not take a four-month long vacation. I took a two-week long vacation. And when I came back it was extra hard to adjust back to real life. (Story of everyone’s life.) My laptop broke in February. Husband’s laptop started acting up. And the web policy at work blocked WordPress. So that’s why I haven’t blogged in a while. I purchased a netbook last week and now I’m really looking forward to catching up. I’ve been reading a lot, so now to get my thoughts in order and respond!

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A Vacation without Cake Not Likely

March 4, 2010

So there’s no time for a more in-depth update before I’m off on my vacation; that will have to wait just one more week.

Leaving your life for a week of fun and adventure when you’re sick is hard! Flying, especially, can be hard on an already imbalanced digestive system. Obviously when the alternative is feeling bloated and sore at home, feeling bloated and sore in a foreign country is not so bad. And there is always positive thinking, because it could be much worse and we should be thankful that it is not. But yet there is always the fear of wasted time and opportunities; what wonders will I miss out on should I start to feel ill? All the time spent planning each careful part of the adventure seems to go to waste.

But I’ve been feeling a bit better lately so here’s hoping that it will be a good trip all the same. Have a great week without cake. I’m probably going to eat some cake, at least once, right before bed, while I’m vacationing in Ireland. Most likely from this restaurant.

Beir bua agus beannacht!

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His and hers low thyroid

February 27, 2010

With all that’s going on with my thyroid, I thought I’d relate this quick story about my wonderful husband. Back in December he complained to his doc of being tired, at my behest. I think he would hate for me to list out his symptoms but he has most every symptom of low thyroid except for weight gain. And his mom is hypothyroid and has been on Synthroid forever. The doctor (we have the same doctor, you may remember – she doesn’t know what a Free T3 is…) put him in for all the regular tests, including a TSH for his thyroid. January was just absolutely tragic for us and involved traveling back home for a death in our family. Between that and his job, and his migraines, he didn’t actually get the blood drawn until late January. He had a follow up with the doc recently and got the results. My husband’s TSH is 3.6.3.6! And surprise, surprise, the doctor says he’s just fine.

Are you SERIOUS? Even if you want to worship TSH, and I know first hand that his doctor does! what about the reference range? You know, the one we’re all supposed to be using that was recommended by the American Association of Clinical Endocrinologists way back in 2003? According to that reference range, 3.3 is the cut off! Well, reference range is after all, just a suggestion, and all labs use their own. Turns out our labs cut off at 4.2 – over that you’re hypo. So we are both out of luck for a diagnosis. How lucky we are. And by the way, what a coincidence that my husband and I are both just whiney, lazy, sad tired people with cold hands!

I know I complain a lot about my healthcare arrangement. I honestly don’t think there is anything especially bad about my specific healthcare facility/coverage or the specific doctors’ attitudes towards and care of myself…I never have, and this proves it because my husband is now facing the same thing. I’m mostly concerned about the state of conventional medicine overall.  And the state of our finances! We are already paying out of pocket for my holistic MD, a hormone specialist who is treating all of my hormone imbalances (update coming early next week) and it looks as if we now have to send my husband in to see the holistic as well. That’s two of us paying full price to see him, but at least we will both feel better in the end.

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The etymology of an orphan

February 26, 2010

Xifaxan and its manufacturer, Salix, has been making news all week. An FDA advisory panel recently recommended the approval of Xifaxan in 550 mg tablets, as an Orphan Drug  for the maintenance of remission of hepatic encephalopathy (HE,) a dangerous result of liver failure.

Xifaxan or Rifaximin, is almost always the front line antibiotic used to eradicate SIBO. According to the literature, it has many advantages over other antibiotics. As a broad-spectrum, non-absorbable antibiotic, it is not absorbed into the bloodstream and it acts against both gram-positive and gram-negative pathogens. In many trials, the administration of Rifaxamin has produced a very low occurrence of side effects and additionally the risk of antibiotic resistance is lower with Rifaxamin than with many other antibiotics. Probably the most unique property of Rifaxamin, and also what makes it most useful to people with SIBO, is its demonstrated efficacy against bloating!  It has also been used to reduce or eliminate cutaneous lesions in Rosacea patients with SIBO.

To be honest I am unclear of the FDA’s recommendation for people with SIBO. If there is an impact, what does the drug’s status as an orphan drug mean for SIBO?

According to Wikipedia, the Orphan Drug Act is “meant to encourage pharmaceutical companies to develop drugs for diseases that have a small market.” That is certainly SIBO!  However, orphan drugs have to treat orphan diseases; conditions that affect fewer than 200,000 people in the United States. I have no idea how many people in the United States suffer from SIBO. During holidays and office birthday parties when I watch everyone eat candy I feel like I may be the only SIBO patient in the nation.

It may not matter whether or not SIBO is an orphan disease. Just a day before the news broke of the FDA recommendation, an article discussing the deliberation noted that Salix is planning to submit a new drug application for Xifaxan this year, specifically for the irritable bowel syndrome indication in the first half of 2010.

 Currently, Xifaxan is prescribed to people with SIBO off-label. The developments of Salix’s new application for Xifaxan for IBS will be of some interest to the SIBO community because if it is approved then Xifaxan could be prescribed specifically for SIBO. Xifaxan has not worked for all of us; I have taken several courses and sometimes it works and sometimes it doesn’t. However, the largest issue with Xifaxan for SIBO is the prohibitively high cost. Most insurance companies just don’t cover drugs when they are used off-label. If Salix’s application is approved, more people with SIBO will at least be able to try Xifaxan. Which, I believe is a good thing. It is interesting to note that there were questions of both efficacy and safety during the HE study, and the SIBO community should be on the lookout to see if these same issues arise during the IBS studies.

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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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SIBO is not Candida

February 25, 2010

I am seriously always butting in where I am not invited. At least I have learned to give disclaimers, and I don’t shove Atkins down everyone’s throats anymore (although its pretty obvious from your symptoms if you are most people!) and now I’m also not such a candida-denialist. (Thanks to my group and thanks to having been on Nystatin and Diflucan for more than a month now RX’ed by holistic doctor.)

In summary, a woman from California (I mention this only because the entire board is for residents of the Central Coast, not girls in Queens!) asks how to get rid of SIBO “naturally.” Of course the first answer is from someone telling her that she has an “idea” that her SIBO is not actually SIBO but really it is Candida.

It’s really hard for me to sit by and watch people deny that SIBO exists. Sometimes, like in this case,  they are well-meaning people, with a background (either as a patient or a practitioner) in natural medicine.  But often they are just selling something, like Dr. Jeff with his McCombs Plan.

Anyway, I jumped in and here is my response:

The only natural treatment for SIBO with any research to back up claims is enteric coated peppermint oil

I moderate a support group for SIBO with 80 members and therefore speak based on the experience of myself and these folks – I am NOT a medical professional. With that said, I have found that you must take peppermint oil for a long time, (6 months or more) alongside other treatments (antibiotic/probiotic) and you must rotate it with other natural anti-microbials (garlic oil, etc.) if you want it to work.

Candida is very real and can co-exist with SIBO. However, the two are not the same. Just because most people have never heard of SIBO or don’t know a lot about it; they dismiss it and call it candida. Yes the diets are similar but they are not the same thing. SIBO is colonic bacteria inhabiting the small intestine. It is not a yeast, friendly or pathogenic. Even the Environmental Illness Resource differentiates the two.

With a SIBO you have to avoid fructose, and fiber. You need something with anti-microbial properties in order to kill the bacteria that exists in the wrong location. Probiotics can assist in ameliorating symptoms, but if the housekeeping wave isn’t working correctly to move things out of the small intestine and into the large, you might be compounding the problem in the long run by loading up on more bacteria.

I have been researching SIBO for years now and I have not run across a natural treatment. Yet it is an important part of the entire treatment regime because Holistic or natural medicine can work to correct imbalances in the body that create an environment that is SIBO-friendly. For example, SIBO can be caused by an underactive thyroid. A holistic MD who treats thyroid based on symptoms and body temperature may detect low thyroid in an individual who would be told by a conventional endocrynologist that they are “normal.” He or she can then treat the patient’s thyroid, adrenal, testicular and ovarian hormones and bring the patient to hormonal equillibrium, helping to create an environment less friendly to developing SIBO. However, if you take a look at the study linked above, you will see that even after treating for hypothyroidism, SIBO patients still needed antibiotics to kill the bacteria.

Other natural things you can do: Eat whole foods, (you are probably already doing this!) Avoid things that you know bother you, whether they are “healthy” or not. It is also very important to take HcL with meals because stomach acid kills off most infections that try to get into the gut, contributing to most bacteria being in the later part of the intestines (colon or large intestine) where they belong.

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