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.

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!

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!

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.

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.

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?

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.

Dear friends,
 
I don’t often pass around requests for petition signatures. Sometimes, when a matter is extremely important to me I do. I’m asking now for a cause that may look, on the surface, to be somewhat unimportant, given the tragedy that we’ve seen thus far in 2010, not the least of which has been the earthquake in Haiti, which has devestated countless lives.
 
However, I’m asking you to give this issue a 2nd look, because it affects so many people, including myself! As some of you know, I have a gastric motility disorder known as SIBO. Having this condition has completely changed my life in many ways, not for the better. Currently there are two bills up for consideration, Senate Bill 981 and House Resolution 2275, to support research and public awareness activities (including professional development for healthcare professionals) for inflammatory bowel diseases. Additionally, there was recently a request for $665,000 in earmark funding issued to the Motility center at Cedars-Sinai Medical Center in Los Angeles to assist the innovative GI Motility research being led by Dr. Mark Pimentel who is studying the use of antibiotics to prevent severe bacterial overgrowth in various GI motility diseases. Dr. Pimentel wrote the book (literally) on SIBO and to this day my doctor and I follow his recommendations to treat my condition. However, Dr. Pimentel hasn’t yet found a cure, nor are there cures for even more serious motility conditions such as gastroparesis or pseudointestinal obstruction.
 
On December 12 (my birthday!) and December 13th Senator John McCain made a series of comments during open debate on the floor of the United States Senate and on a Fox News broadcast protesting against this earmark. His comments trivialized motility disorders and the important research that is needed to help people affected by them. I echo the belief of my friend Michael Smith of G-PACT when I say that these types of comments only serve to foster an unnecessary ignorance of the severity of GI motility disease. Given what I and my family have been through during the last four years, I can promise you that SIBO and other motility disorders are neither funny nor trivial. Speculative reserach has linked SIBO to many other non-gastrointestinal conditions such as Fibromyalgia, Fatigue, and Interstitial Cystitis. Sadly, I have recently been diagnosed with some of these other conditions.
 
So that is why I’m sending you this email and asking you to sign this petition: “Senator McCain: Support Research Funding for Gastric Motility Disorders “
http://www.ipetitions.com/petition/gastricmotilityresearch/
 
It doesn’t matter what your political affiliation or partisanship is. You can support John McCain but he needs to know that you don’t think his comments were appropriate or funny. Many people of both political parties suffer from motility disorders. All politicians need to know how important it is that we fund research and find a cure for these conditions. Please sign this petition and please pass my request along to your friends as you see fit.
 
Many, many thanks to all of you, my friends

It’s true. I mean, I lived through months and months of mostly the same thing every night – a link here and there to a journal article I’d already read. Or a link to a citation to that same journal article. Or a brand new lit review would come out rehashing all the relevant SIBO literature, which I’d already read. Hooray! Sometimes the link would point to a recent forum post penned by – you guessed it, me! I did learn something completely new from my SIBO Google alerts – apparently SIBO is a very popular nickname!

So, when one day I opened up my Google alert to find mention of NonNoshing and Noragomy (what?) and Celiac disease, I probably didn’t think much at first, but I followed the  link anyway, and what did I see but someone else who used to really enjoy food and eating but now had problems with common, everyday items like fructose and gluten! I read with excitement upon finding my very first SIBO-centric blog besides my own, and I commented immediately. And here we are, about a month later and we’re twittering for SIBO Awareness. That’s right! You may have noticed that my twitter link has changed from my personal account, which is sometimes SIBO-related, to a new one using my blog name. You can find me here: http://twitter.com/GirrlockHolmes

Please follow me and then follow NonNosher, my partner for SIBO Awareness here: http://twitter.com/NonNosher

We want doctors to know how to test for and diagnose SIBO. We want nutritionists to recognize the signs and symtpoms of SIBO and be able to recommend healthy, SIBO-safe food choices. We want SIBO to get the same publicity that Celiac disease and the gluten-free lifestyle have. We want an easier time for the woman or man who wakes up one day and wonders where the bloating and distention or diarrhea and constipation or migratory myalgia or any other more or less common SIBO symtpom are coming from to have a little bit of an easier time on thier way to diagnosis. We want awareness and eventually we want something beyond treatment and recurrance. We want a cure!

NonNosher will probably, much like myself, need a little more than a year to eat weirdly and abstain from cake. Maybe, like me, NonNosher will need a few years. Here’s to a shared campaign and the wonder of the internet for bringing two women in two different states with the same digestive condition together to tweet for more awareness about SIBO!

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.