All You Ever Wanted to Know About S.I.B.O.


S.I.B.O – Small Intestine Bacterial Overgrowth (A Chronic small intestine infection)

1) Definition and description of the disorder: (*This is from the info that the Dr’s office gave to me): Simply put, Small Intestine Bacterial Overgrowth is a chronic bacterial infection of the small intestine. The infection is of bacteria that normally live in the Gastrointestinal tract but have abnormally overgrown in a location not meant for so many bacteria.

2) What people are saying?: I posted an article on National pain report here:

http://nationalpainreport.com/sibo-the-missing-piece-of-chronic-pain-dysautonomia-8832039.html

**Most people have been saying that they have had problems like this for up to 20 years but had no idea what it was. They took my article to their Dr and their Dr’s did not know what it was for most. But some who went to specialist GI Dr’s, got the Breath test done and then they were diagnosed and helped. There are many comments following this article, of other things people are saying about “SIBO”. Also, people have gone months, years or decades before ever getting a proper diagnosis. It is known from what little research exists, that tress, trauma, autoimmune illnesses and more, can contribute to the symptoms of SIBO.

3). Symptoms: gas/expel flatus, within Small Intestine. The gas causes abdominal bloating, abdominal pain, constipation, diarrhea or both (similar to symptoms of IBS). Excess gas can also cause belching and flatulence. Also symptoms include painful and bloated abdomen

(*looking and feeling like a 3-5 most pregnancy), nausea, vomiting, diarrhea, malnutrition, weight loss, joint pain, fatigue and chronic fatigue.

4). Possible co-morbidities: People with SIBO normally have illnesses such as Dysautonomia and/or Autoimmune illnesses. This is information given to me at the Dr.’s office. But on the website listed below, on weebly.com, it is noted that There are many conditions associated with SIBO including: diabetes, scleroderma, Crohn’s disease, and others. There is a striking similarity between the symptoms of irritable bowel syndrome(IBS) and SIBO. It has been theorized that SIBO may be responsible for the symptoms of at least some people diagnosed with irritable bowel syndrome. Autoimmune nerve damage to the small intestine is frequently a cause of SIBO.

5) Treatment Options: The treatment for SIBO is a 7-10 day course of antibiotics. They do treat the infection and so the symptoms disappear for awhile. The problems lie in that the disease that causes SIBO can’t be corrected at times. The symptoms return frequently, once the antibiotics are stopped. Some patients need to be treated with antibiotics repeatedly or even continuously. Some readily available probiotics used are: VSL#3 or FLORA-Q, but their effectiveness has not been proven. Also, Bifidobacterium infants 35624 is the only probiotic that has actually proven helpful in treating symptoms of IBS and SIBO.

6). FDA Approved medications: the approved medication for SIBO is antibiotic therapy. Also, a dietary supplement called “Allign” is often given in conjunction with the antibiotics. It is a probiotic which can help alleviate some of the bacterial overgrowth.

7) Complimentary Therapies: Allign is an OTC probiotic, that does alleviate some of the symptoms and some of the bacteria. Also, eating probiotic yogurts daily, will help cut down the occurrences of SIBO. Meditation and Guided imagery have been helpful in relieving some of the stress in the body and gut.

8) Best Nutrition: The best nutrition is to make sure that you eat yogurt and any other dietary items with probiotics in them.

*FODMAPs (fermentable oligosaccharides, disaccharides, monosaccharides and polyols) are found in certain foods that are commonly poorly absorbed and fermented in people with IBS and SIBO, so restricting them can be very helpful. *there is a resource below that will help you with this and explain more about FODMAPs.

9) Best exercise regime: This can be difficult because what they have found is that exercise in any rigorous manner can actually worsen the symptoms of SIBO. But a healthy diet and walking 30 minutes daily for most of the days of the week, do help the symptoms of SIBO.

10) Local Support Groups: Right now there are only 4 support groups in the USA. They are NYC SIBO Support group, SIBO Support Group Los Angeles and the Portland, OR SIBO support group. There are several online support groups on Yahoo groups and on Facebook. The most well known for being a “good” support group, according to the article in #4 below in “informational resources”, is here: https://www.facebook.com/groups/470628319710443/

11) Links to other organizations and websites and additional info:

A) https://sibocenter.com/2016/02/resources/

B) http://www.Siboinfo.com

C) https://cemoodle.nunm.edu/

12) Personal Story for Someone to Connect with: I have had GI problems for many years and after 2002, when I was in a “catastrophic” motor vehicle accident, they increased. I had tried about 4 different GI Dr’s, but none of them could figure out what was wrong with me exactly.

They kept telling me it was “IBS”, but I knew it was something much more and different from that. IBS is enough to deal with and a horrible problem, but I was having even more serious issues. I finally found a wonderful GI Dr in Michigan. He did some tests that the others had not done. One of the tests was called a “Hydrogen Breath test” and the other was a digestive test for Gastroparesis. It turns out that I have both the SIBO and the Gastroparesis, along with Chronic Erosive Gastritis. I felt bloated and looked a few months pregnant and was having a lower abdomen burning sensation. Now I take monthly antibiotics, or pretty much monthly. I have to rotate with 3 different kinds of Antibiotics because they don’t work well if you become immune to the same one often. I stuck it out and did not give up until I found a Dr. Who would actually listen to me and not dismiss my issues, because I have so many and because I’m a “complicated case. Now I try to eat a probiotic yogurt daily and I cannot take the “Allign” due to a heart problem called “Long QT syndrome”, as it interferes with that. But I do have to take the antibiotics and I have found some relief with online and Facebook support groups for general pain issues and now one for SIBO too. I have listed everything for you above or below. I wrote an article that I have posted above for you, in the National Pain Report last year. When people commented, I was amazed at how many people had the same symptoms and no relief. Many people told me that they printed out the article and took it to their GI or PC Dr’s, and they were tested with the simple Breath test. They have also found some relief and for that I am extremely happy. If you have any questions, please don’t hesitate to ask?

13). Graphics:

A). There are some YouTube videos here:

1: Youtube video: On SIBO from Gastroenterologists : (Digestive disease week 2012)

2: Youtube video: Info about Gut Bacteria & SIBO

INFORMATIONAL RESOURCES:

1) Information on SIBO

2) also from a handout from GI Dr’s office in MI, called “Overview-SIBO-Small Intestine Bacterial Overgrowth” (the handout was found at: EE Website : Brochure about SIBO

3) IBS & SIBO INFO

4) Start a SIBO Support Group

5) Small Intestine Bacterial Overgrowth, the case of the perpetual patient : The case of the perpetual patient

All You Ever Wanted To Dysautonomia


Definition:

  1. Dysautonomia refers to a malfunction or disorder of the Autonomic Nervous System (ANS). This is usually involves failure of the sympathetic or parasympathetic nervous system; but it can also mean that the ANS may be overactive. Dysautonomia refers to the “involuntary” systems of the body. This can include: body temperature, blood pressure, respiratory/breathing, sleep, heart rate and more. Dysautonomia can be considered “Local” as it is in many cases of CRPS, or it can be a total Autonomic failure. Sometimes Dysautonomia is considered to be “acute” and reversible. Other times it may be chronic and progressive (as in Diabetes or Parkinson’s). A person may be diagnosed with Dysautonomia by itself, as a condition. It can also be associated with degenerative and neurological diseases. Dyauatonomia is actually an “Umbrella term” used to describe many different issues that occur due to the malfunction of the Autonomic Nervous System.Lastly, Dysautonomia is responsible for our “fight-or- flight” response. This is what gets our body ready for stressful situations. When the nerves of the ANS are damaged, you can get Autonomic Neuropathy as well. These dysfunctions can range from mild to life threatening.
  2. What People Are Saying: people are saying that Dysautonomia is a common ailment among people with autoimmune illnesses, CRPS, Chiari, Ehler’s Danlos Syndrome (EDS) and even Diabetes. The most common symptoms that people in the chronic pain community speak about is a fall in blood pressure during standing or “Orthostatic Hypertension” or a rapid pulse rate. Other things that are said about Dysautonomia are that it causes abnormal sweating, emotional instability and motor incoordination.
  3. Symptoms: Some symptoms of Dysautonomia *(aka Autonomic nerve disorders) are: syncope (fainting), Orthostatic Hypotension and/or intolerance, POTS (Postural Orthostatic Tachycardia Syndrome), Gastroparesis, Intestinal Dysmotility, constipation, Erectile daysfunction and neurogenic bladder. Other symptoms include: fatigue, light-headedness, weakness and cognitive impairment. In Dysautonomia involving the Gastrointestinal tract, the patients often feels nausea, bloating, vomiting and abdominal pain, when the ANS malfunctions.
  4. Possible comorbidities: Possible illnesses that go along with Dysautonomia can include: CRPS, EDS, Chiari, Gastroparesis, Autoimmune illnesses, Lupus, POTS, NCS (Neurocardiogenic Syncope). Other co-morbidities include: Multiple Sclerosis, RA (Rheumatoid Arthritis), Celiac Disease, Autonomic Neuropathy & Sjogren’s Syndrome etc. The worst form of Dysautonomia, which is a fatal form that occurs in adults ages 40 and up, is called MSA. This means, “Multiple System Atrophy”. It is similar to Parkin-son’s disease but MSA patients become fully bedridden wishing 2 years of diagnosis. But please note that this is very, very rare and only about 350,000 people have the MSA form, worldwide.
  5. Treatment options: There is no cure currently for Dysautonomia at this time but secondary forms can improve with treatments for the underlying disease. You can help the Orthostatic hypotension by elevating the head of the bed, rapid water infusion (given rapidly in an IV) and eating a higher salt diet. Other treatments may include exercise and healthy diet.
  6. FDA approved medications: Midodrine is an FDA approved medication that helps with the syncope and collapse.
  1. Complimentary Therapies: Biofeedback and exercise with the right amount of salt may help some of the symptoms of Dysautonomia. Biofeedback can teach you how to calm yourself of anxiety which often comes with this illness. There was a Webinar back in early Winter 2017, that US Pain hosted. It was about “Earthing” or “Grounding (”http://forums.phoenixrising.me/index.php?threads%2Fi-think-earthing-cured-my-dysautonomia-pots.24992%2F and this therapy has been known to help this person; who wrote her experiences about “Grounding” helping her symptoms of Dysautonomia. *I was also prescribed a “cooling vest” to help with the feeling of overheating inside of my body
  2. Best nutrition: higher salt intake and staying hydrated are the two most important things to remember with Dysautonomia and nutrition.
  3. Best exercise regime: Exercise can be difficult when you feel very fatigued and barely able to stand at times. Also, you need to get the permission of your Physicians before starting any exercise program. Also, staying hydrated while increasing aerobic exercise, lower extremity strengthening, increasing fluid/salt intake and psychophysiologic training for management of pain and anxiety, along with family education. People also say that exercise intolerance is part of Dysautonomia but it is essential to helping with it. Start off slowly and avoid exercises that cause orthostatic stress. This includes minimal or no vertical movement, including rowing, recumbent biking or swimming.
  1. . Local Support groups: Local support groups can be found at the website: “Dysautonomia International”, here: Dysautonomia International and you may email Dysautonomia International at: info@dysautonomia for online support group resources. They do not verify the accuracy of information posted in the groups*.
  2. . Links to other organizations and websites and additional info: The best website with a lot of information here: ( Dysautonomia International ) at “Dysautonomia International”. They have links to support groups and online support, as well as diet and exercise tips.
  3. : Personal story for someone to connect with: Dysautonomia is something that I was likely born with. I was involved and injured in two automobile accidents that have inevitably made it much worse. First in 1983, I was hit by a drunk driver while sitting at a red stop light. Secondly, in 2002, a man in a pickup truck, ran through a red light and I suffered multiple injuries and had many surgeries. I also suffered an MTBI or “MildTraumatic Brain Injury”. One of my treatment team of Dr.’s is a Neurocardiologist, and he told me that my Dysautonomia was made much worse due to the “sloshing” of my cerebellum against the skull wall. I do have severe systemic CRPS, Chiari, RA, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (aka EDS type 4/vascular) and Gastroparesis. These are all hallmarks of the umbrella illness of Dysautonomia. Following the auto accident in 2002, I was fainting quite often. We found out that my brain was not telling my heart what to do, because I have Autonomic Nervous System Failure. I ended up requiring a dual changer pacemaker. It now does 87% of the work for my heart. I am very lucky to have found a wonderful specialist in Dr. Blair Grubb, MD at the University of Toledo Medical Center. He is known around the world as far away as the UK!

**Various other personal stories for me are found here at my blog “Tears of Truth” and at: tearsoftruth.com:

A). Dysautonomia/POTS & S.I.B.O. and this one: Article about Dysautonomia/POTS & SIBO

B). Another article for you!Https://Wordpress.com/post/tearsoftruth.com/9263

Helpful YouTube Videos:

A. Dysautonomia/POTS

B.Dr Blair Grubb on POTs

***Informational Sources:

1. Dictionary.com on Dysautonomia

2. Medical News Today in Dysautonomia

3. Dysautonomia International

4. http://forums.phoenixrising.me/index.php?threads%2Fi-think-earthing-cured-my-dysautonomia-pots.24992%2F

5. Dysautonomia International more on Dysautonomia

6. Mayo Clinic on Dysautonomia

7. Healthline.com on Dysautonomia

8. Clevland Clinic on Dysautonomia

9.WordPress blog “Tears of Truth” on Dysautonomias

SIBO, The Missing Piece of Chronic Pain Dysautonomia


 

Difficult question

One Summer day in 2002, a man ran through a red light and changed my life forever. I didn’t know what pain was until then, except for childbirth. After the MVA, I went through multiple surgeries, chronic intractable pain and then one medical issue/diagnosis after another. I now have an Autoimmune disease called “Combined Immune Deficiency”, which renders me unable to be a candidate for many surgical pain interventions.  I have several pain illnesses such as:  Systemic/full Body RSD/CRPS, Arnold Chiari I, Polyneuropathy in Collagen Vascular Disease (which is similar to EDS type 4/Vascular), Degenerative Disc Disease, Autonomic Neuropathy, Scoliosis, Rheumatoid Arthritis,Dysautonomia/POTS, CFS, Gastroparesis, Chronic kidney disease II, Chronic Erosive Gastritis, and there are more. I won’t bore you with the rest of the list because you get the idea!  Except for the latest diagnosis that I’ve been given, puts the puzzle together for me in some ways.

Are you a chronic pain patient who has had IBS (Irritable Bowel syndrome) and much trouble with your stomach and digestion? Have  you been diagnosed with Chronic fatigue? Do you have Fibromyalgia? How about Dysautonomia, POTS and EDS?  Well, it took me several Gastroenterologist’s to actually find one that would truly listen to me. One who had knowledge of such things as CRPS and Dysautonomia and ANS failure. We all need to visit specialist after specialist, until finding one who truly listens. Luckily, the GI Dr.that I’ve found, is knowledgeable about CRPS and many of the pain illnesses that I have. He did many blood tests, EGD, colonoscopy and gastric emptying test. He gave me the diagnosis of chronic erosive Gastritis. He said “Do you see the CRPS lesions on your hands and legs/feet? That is what the inside of your stomach looks like”. Then in giving me the diagnosis of  Gastroparesis he explained  how my  Dysautonomia most likely contributed to many things, including the next illness that I would be diagnosed with. I finally had answers and was so relieved to at least know what was going on inside of my body. But that was only part of the puzzle.

Next, he ordered a test for me, called a “SIBO” or “Small Intestinal bacterial overgrowth” test. In the end, it shows if you have a chronic small intestinal bacterial infection or not. Most people have this test and it can last up to 3 hours. Mine was positive after only 20 minutes, because the numbers tripled during that time! I was given a positive diagnosis for “SIBO”, and then a couple of medications; including an antibiotic. They printed out an information sheet and made me a  return visit appointment with the Dr. in a few weeks.

I actually rushed to my keyboards in order to share this information with my “pain friends” and the “pain community”. This is an important piece of the “puzzle” for many, I believe.  I will try to explain this in the best way I know how, but you need to talk to your physician about it,  in case it could be part of your puzzle.  You see, we all have the “normal” bacteria in our GI tract. The small intestine not only plays an important role in digestion and getting the nutrients from our food, but it also plays a very big role in our immune system and fighting infections. The “good” bacteria help with absorbing vitamins and nutrients such as Vitamin K, A and folate. They even help with the muscles that move food through our systems.

SIBO is essentially a chronic infection of the small intestine.  They have found it shows up positive with many chronic conditions. It can lead to various IBS symptoms such as: bloating, abdominal pain/discomfort, Diarrhea, Constipation, Gas/belching and in more severe cases there can be weight loss and the symptoms related to the vitamin deficiencies. One of the biggest issues it causes is called “leaky gut”. But it can “mess with” our immune system as well. This in turn, may cause an increase in allergies, food sensitivities, fatigue, altered cognition or “brain fog”, pain and other neurological symptoms. SIBO is a bacterial infection but it is NOT contagious. It is very hard to treat because antibiotics are used, but in about half of all patients it returns within a year, maybe several times. Extended use of antibiotics is a risk factor for SIBO! It has been studied and most patients with Dysautonomia also suffer from SIBO! There are several publications out now, that find a strong connection between SIBO and Fibromyalgia as well.

So why am I telling you this?  Mostly, because many people who have CRPS, EDS, FMS, CFS and other pain illnesses or ones which cause fatigue, also have Dysautonomia. Abnormal autonomic function can cause many varying symptoms, including:  fatigue (*not just being tired, but a lack of energy so severe that has a huge impact on a patient’s life), sleep disturbances, altered cognitive function (*known also as brain fog), cold/heat intolerance, headaches (*headache upon waking up are common with ANS dysfunction), bladder/bowel dysfunction and stomach pain (*GI symptoms such as: bloating, early fullness are a part of ANS dysfunction as well). Digestion is a large part of the Autonomic nervous system. In addition, many people with EDS Hypertonicity/Spasticity or abnormal muscle tone have Dysautonomia; along with POTS (Postural Orthostatic Tachycardia Syndrome), Visual disturbances and altered sweating.

Treating this small intestinal bacterial infection (SIBO) is very challenging. Treatment is more than just helping with IBS symptoms.  SIBO, as I have discussed, is often present with many of the autoimmune or chronic inflammatory diseases. Getting rid of the “wrong” bacteria is most important. I was given an antibiotic and probiotics. But some patients, I’ve read, are given antimicobials, and pro kinetic agents such as low dose Naltrexone.

If you have any of the symptoms of SIBO that I’ve mentioned above, talk with your GP or see a Gastroenterologist, a specialist in digestion and motility disorders. For more information you can visit: https://autonomicspecialists.com/symptoms/, https://autonomicspecialists.com/small-intestine-bacterial-overgrowth-sibo/, http://www.thedysautonomiaproject.org/‎, https://draxe.com/sibo-symptoms/, http://www.mitoaction.org/files/Dysautonomia.pdf, https://autonomicspecialists.com/small-intestine-bacterial-overgrowth-sibo/

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I want to add that SIBO is just another painful part of  living with Chronic Pain illnesses. The diagnosis of Combined Immune Deficiency disease,  makes me one of those persons who needs access to Opioid pain medications. Due to risk of infections and an even higher risk of paralysis; I’m one of many pain patients  who are not candidates for SCS or a pain pump. We need to be heard and to keep our voices going strong. Continue to reach out to our Government representatives, regarding the error in  labeling us as “addicts”.  A grossly incorrect label given to those of us living with chronic daily pain but who require Opioid pain medications. The majority of Chronic Pain patients take these medicines responsibly. We should not be lumped together with Heroin addicts and those persons who abuse drugs. I/We do NOT get a high, nor do I/we crave our pain medications. We require them just as a diabetic needs insulin. In my own life, the Opioids help my CRPS, the horrible burning nerve pain & give me a reprieve. In the same way that other medicines help people with different specific illnesses. If the diabetic or the person with high blood pressure stops their medications quickly, they will get very sick and could even die. Why can’t the CDC, DEA, PROP Dr.’s and our Government see this?  That I too, can digress, get very ill and even could have seizures or a heart attack if I am abruptly removed from my Opioid pain medications? The exact pain medications that I have been prescribed and have been taking  at the same or lowered dosage since that auto accident in 2002.

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