Thursday, December 16, 2010

SIBO, Yeast & Leaky Gut and YOU!

SIBO is an acronym for small intestinal bacterial overgrowth, sometimes also referred to as SBBO, small bowel bacterial overgrowth. The small bowel is about 20 feet long, connects the stomach to the colon (large bowel/intestine) and is responsible for secreting a hormone (secretin) that stimulates the pancreas to produce digestive enzymes. Digestion fulfills the bowel’s purpose, breaking down food into nutrients and eliminating waste or unwanted products

The small bowel has fewer bacteria than the large bowel, but none the less, it has bacteria that should be there. However, when these bacteria have outlived their stay/purpose, the bacteria become unfriendly, rather like fermenting.

SIBO can result from such things as a partial bowel obstruction, adhesions, bowel disease, such as diverticulosis or other anatomical malformations, slow motility either from medications or damage to the intestinal nerve endings from disease. This causes the symptoms that are often confused with irritable bowel syndrome. Certainly people with IBS can also have SIBO, and it seems may be at a higher risk, therefore, SIBO should be considered in FM and CFID (ME/CFS) patients with IBS. Failure to treat SIBO can cause long term problems.

It is diagnosed by a hydrogen breath test and other more invasive techniques and there are antibiotics specific to the GI tract, which might decrease the chance for yeast which can also overgrow in the bowel.

*The following is an excerpt from the book and is protected under copyright laws. Helpful links have been inserted into the material to provide more information.

Candidiasis © Yeast
Intestinal yeast has been linked to small bowel bacterial overgrowth (SIBO) causing excessive gas, bloating, abdominal pain, and altered bowel habits.(1)

Yeast infections can occur with FM and overgrowth may increase the symptoms of bloating, brain fog, abdominal complaints, and muscle aches associated with FM and CMP. It can also exacerbate the usual symptoms of FM and CMP.(2) It has been identified as a possible trigger to CFID, and some association has been made with chronic candidiasis syndrome.(3) Yeast infections should always be treated, but you can also exercise preventive lifestyle choices.

To help prevent vaginal yeast, avoid vaginal douching, keep the area dry, and use a blow dryer after showering. Wear 100 percent cotton underwear dried on high heat, and avoid nylon panty hose. If you are a carbo junkie, change your diet. There are other reasons for this that will be discussed later, but understand that excessive sugar and carbohydrate intake have been linked to a higher risk of developing yeast overgrowth. Insulin resistance and some medications may perpetuate yeast or leaky gut. (4)

[Leaky Gut, LGS, causes body-wide symptoms because of holes in the intestinal barrier. Due to this breakdown, the bowel does not function normally and does not filter out some harmful substances, such as bacteria, toxic waste products, food additives, infectious agents, and inflammatory substances…. with this disruption to normal bowel function, the immune system leaves the gut open to infections and yeast overgrowth, causing not only gastrointestinal symptoms like bloating, gas, diarrhea, and abdominal pain, but other feelings of ill health as well. Cooper & Miller, pg 97-98]


Antibiotic use should be avoided when possible, as antibiotics are indiscriminate and kill off our “protective” flora along with offending microorganisms. Of course, there are times when their use is needed. Just be aware that when you must take antibiotics, candidiasis may occur and need to be treated. Talk to your doctors if you are prone to yeast infection with antibiotic use, so that you can get appropriate treatment. There are specific tests to check for candidiasis-initiated responses by the body, called IgG, IgA, and IgM antibodies.(5)

(end of excerpts)

In the case of SIBO, antibiotics are necessary because of the “bacterial” Depending on the underlying factors for overgrowth, some patients will have to be on antibiotics long term,. In this case there may be rest periods between antibiotic therapies. Following is a link, Medcinenet.com, which discusses a comprehensive approach to treatment.

http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/page6.htm

I personally have had good results with Xifaxan, but that doesn’t mean everyone will. It depends on the bacteria and follow up is suggested. Probiotics such as lactobacilli and bifidobacteria are suggested for all conditions. It is believed they may inhibit the development of bad bacteria and boost immunity.

If you have these symptoms, I hope you will approach your gastroenterologist (GI doctor). This condition is quite painful and when coupled with irritable bowel syndrome the pain, loss of sleep and comorbid symptoms can be overwhelming. If SIBO or Leaky Gut are at the root of your disorder, you may find treatment that minimizes your symptoms and increases your quality of life

Harmony and Hope, Celeste.


Resources:

(1) GI Problems—Is Bacteria to Blame? Fibromyalgia Network Newsletter (July
2000): 3.

(2) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain: A Survival
Manual
, 48.

(3) R. E. Cater, 2nd, “Chronic intestinal candidiasis as a possible etiological factor in the chronic fatigue syndrome,” Medical Hypotheses 44, no. 6 (June 1995):
507–15.

(4) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain: A Survival
Manual,
296.

(5) Cooper & Miller. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. 83.

Wednesday, December 8, 2010

Correspondence NIAMS (NIH)-Diagnostic Criteria for Fibromyalgia

I have received a reply from the National Institute of Health NIAMS to my original letter of
October 26, 2010 regarding inclusion of the assessment of myofascial trigger points and restless leg syndrome in the proposed diagnostic criteria for fibromyalgia. My original letter can be here at the blog,
http://fmcfstriggerpoints.blogspot.com/2010/10/proposed-fm-criteria-letter-nih-naims.html

I thought you would be interested in what they had to say, and what I have to say in my reply to Mr. Clark, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), Public Liason.

Mr. Clark’s letter is following my reply. Harmony and Hope, Celeste

December 8, 2010

Dear Mr. Clark

Thank you for your response.

While I understand the role of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), I believe it is important that the researchers you support have a concise tool and method for understanding the diagnosis of fibromyalgia (FM). The tender point model evolved as a diagnostic tool, but was developed to screen FM research participants. The diagnostics for fibromyalgia should not be separated from the research. When investigators do not have a consistent diagnosis method, the science becomes seriously compromised. Therefore, the proposed diagnostic criteria for FM are important to research funded and supported by the NIAMS, National Institute of Health (NIH) and any other entity interested in investigating the causes and treatments for FM.

We look forward to further research on the relationship of peripheral pain generation by MTrPs and wind-up in the FM brain. As I stated previously, the literature shows us not all people with MTrPs have centralization. We need to understand why this phenomenon occurs in FM, as well as, phenomena such as RLS, which we now know is ten times more likely to occur in FM. Restless leg syndrome could explain, at least in part, dysfunctional sleep (1), but understanding the orchestration of the brain in any disease process is complicated. Since learning more about these two occurrences, ignoring the importance of a physical exam in diagnosing FM will lead us, the patient, researchers and clinicians, down another twenty years of unsuccessful outcome. As Dr. Bennett has said, it is like “throwing the baby out with the bathwater.” (2) Restless leg syndrome could also have a myofascial component with centralization, but how would we know without a physical assessment by someone educated to do so?

Dr. Siddhartha Sikdar’s research on ultrasound imaging sounds exciting, but unless the diagnostic criterion for fibromyalgia includes assessment of myofascial trigger points (MTrPs), it is meaningless to at least a subgroup and possibly all fibromyalgia patients. (3) I assume his research is ongoing, as I was not able to find an abstract on Pub Med and I was unable to navigate the link provided, but I am interested in reviewing this research. To be able to document MTrPs with ultrasonography is a step in the right direction, resulting in better treatment. As it stands now, few are willing to do TrP injections on myofascial trigger points in the scalenes because of their proximity to major vasculature and the lung apex. This leaves us untreated or undertreated. As you know the MTrPs in the scalenes (along with other muscles of the head and neck) perpetuate migraine headaches (4), a frequent co-morbid condition in FM.

As a past nurse educator who wrote continuing education programs for the Missouri State Board of Nursing, I am happy to see the NIH has developed a tool, PROMIS, for measuring outcomes. (Please take this as constructive, as that is how it is intended, there is a typo regarding the anti-diarrheal for treatment of IBS. It should read Lomotil.) The NIH site has useful information, but does not reflect the new research (citation in my original letter on the prevalence of MTrPs in FM). Weight bearing exercises can active latent TrPs. Some patients, me included, cannot aggressively increase exercise without a horrible outcome. (I was once a downhill skier, water skier, racquetball instructor, hiker, competitive roller skater, and league golfer, I WANT to exercise, and I am certainly not alone). When a patient is told to kick it up a notch and their pain is increased significantly (in many cases activating numerous MTrPs in multiple muscles, in multiple layers), causing greater dysfunction, they will avoid it all together, this is NOT what we want. Patients need an exercise that is right for them, so they will be compliant. I am glad to see that changing daily behaviors to incorporate incidental movement is considered, however, recognition of and understanding of MTrPs and exercise is paramount in treating the FM patient.

The HPA axis is dysfunctional in FM, and therefore makes it difficult to diagnose conditions such as Hashimoto’s, hypothyroid or thyroid resistance which rely on a normal orchestration between the pituitary and thyroid. Metabolic disturbances can cause mental fog, lethargy, weight gain, and may exacerbate MTrPs and make them harder to treat. (5) Yes, many things must be considered. All of this is discussed in our book with appropriate references. I would be happy to have my publisher, Healing Arts Press, send you a copy for review.

The drugs you suggest were not developed for FM specifically. They are drugs that have been tweaked or remarketed by pharmaceutical companies with little effort on research. They are helpful for a few, but not all, and we need more square one research on medications and assessment of those currently being used. I understand the need for a benchmark, but I want to see the research move forward. Classes of medications approved for FM (keep in mind that these medications were prescribed off label for years, without the benefit of a formal study and protection for the study participants), have the potential to interact with medications used to treat the co-morbid conditions. Frequently these medications are given in samples and are not logged at a patient’s pharmacy. As a nurse, this is of great concern.

The primer for FM research should include an extensive literature and research review. Let’s support research into the cause of development of MTrPs in fibromyalgia, their relationship to each other, centralization, co-morbid conditions such as periodic limb movement, restless leg syndrome, disrupted sleep cycles, irritable bladder syndrome, irritable bladder, bruxism, temporomandibular dysfunction, dysmenorrhea, impotence (yes, men should be included in all FM studies, this is NOT a disorder specific to women), et al.

Physical, mental, emotional and spiritual balance is necessary for coping with chronic pain and fatigue; however, fibromyalgia is NOT a somatoform disorder, and we are not at any greater risk than any other chronic disease patient. Meditation, deep breathing, T’ai Chi, stretching, (all methods that we highly support and suggest in our book), and medications will promote muscle relaxation, however the ONLY treatment for MTrPs presently known is direct manipulation. Pain perception and development of healthy coping strategies are paramount in wellness for ALL people. Let’s use the research money effectively.

I am excited to see the research going on at NIAMS, especially the TMS, (which I would like to know more about) but one day I hope to open the link on FM at the NIAMS website and see assessment of myofascial trigger points, and therapies to treat them, and a suggestion that all FM patients have sleep studies.

Thank you for your time, your consideration and your efforts at educating, “improving patient outcome, one step at a time.”

Sincerely,

Celeste Cooper, RN author


(1) Viola-Saltzman M, et al "High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study" J Clin Sleep Med 2010; 6: 423-427
(2) “Drs Bennett & Clauw Debate Abandonment of Tender Point Test in Revised FM Diagnostic Criteria.” FM Aware, Fall issue.
(3) Rehabilitation Medicine Department, National Institutes of Health Clinical Center, Bethesda,MD. Project: Imaging Myofascial Trigger Points, 2008-present. Collaborators: Jay Shah MD. (http://gunston.gmu.edu/ssikdar/documents/current%20CV/CV%20Siddhartha%20Sikdar%20latest.pdf, accessed December 5, 2010).
(4) Myofascial Pain and Dysfunction: The Trigger Point Manual by David Simons, Janet Travell, and Lois Simons, 2nd ed. Philadelphia: Lippincott Williams and Wilkins, 1999. Vol 1, pg 241.
(5) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome: A
Survival Manual
, 44.


CC:
The American College of Rheumatology, % Amy Miller
Robert Bennett, MD, FRCP (University of Oregon)
Brad Ellis, Liaison, The American Pain Foundation
Shari Ferbert, Advocates for Fibromyalgia Funding, Treatment, Education, & Research
Alan Alan Gurwitt, President Massachusetts CFMDS/ME & FM
Jeff Miller, PhD, author
Rocky Mountain CFS/ME & FM Association Attn: Tim
Marly Silverman, Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc
Devin Starlanyl, author, researcher
Kristin Thorson, American Fibromyalgia Syndrome Assoc


Dear Ms. Cooper:

Your email inquiry was forwarded to the Office of Communications and Public Liaison of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) for a response. The NIAMS, a part of the U.S. Department of Health and Human Services’ National Institutes of Health (NIH), supports medical research into the causes, treatment, and prevention of diseases of the bones, joints, muscles, and skin.

Thank you for copying the NIAMS in your letter and sharing with the Institute your concern about the proposed diagnostic criteria for fibromyalgia. Please note that the NIAMS is not an author or sponsor of these diagnostic guidelines, as that is not within our mission. Our mission is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases. It is not the intention of the NIAMS to provide clinical diagnoses or recommend any particular treatment or service, but rather to provide information to better understand health conditions that are encompassed by the Institute.

The NIAMS sponsors research that will improve scientists’ understanding of the specific problems that cause or accompany fibromyalgia, in turn helping them develop better ways to diagnose, treat, and prevent this syndrome. This research covers a broad spectrum, ranging from basic laboratory research to studies of medications and interventions designed to encourage behaviors that reduce pain and change behaviors that worsen or perpetuate pain.

You may be interested in a study in myofascial trigger points (MTrPs) currently being funded by the NIAMS. The principal investigator is Dr. Siddhartha Sikdar at George Mason University. This research group has developed new ultrasound imaging methods to visualize and characterize the physiology and physical properties of the MTrPs and their surrounding soft tissue. Their research goal is to use this technology, along with other innovative approaches, to achieve a more comprehensive understanding of the abnormalities associated with MTrPs. If you would like to learn about other research that the NIAMS and the NIH are supporting, you can access the NIH RePORTER database at: http://projectreporter.nih.gov/reporter.cfm.

Another NIH project that may be of interest you is the Patient-Reported Outcomes Measurement Information System (PROMIS), an initiative that is researching and developing new ways to measure patient-reported outcomes (PROs), such as pain, fatigue, physical functioning, emotional distress, and social role participation that have a major impact on quality-of-life across a variety of chronic diseases. The goal of this initiative is to improve the reporting and quantification of changes in PROs. The NIAMS supports an effort to develop PROMIS specifically for use in patients with fibromyalgia. You can read more about how researchers are learning about fibromyalgia in our booklet, “Questions and Answers About Fibromyalgia,” which can be viewed online at http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp.

The NIAMS Information Clearinghouse serves the community by producing and distributing health information brochures free to the public and referring requestors to outside voluntary and professional organizations. For more information please visit the following link on our Web site at http://www.niams.nih.gov/About_Us/Mission_and_Purpose/Community_Outreach/default.asp. Our online catalog of free publications can be found at http://catalog.niams.nih.gov/; these materials are updated regularly to keep current with the latest research.

I hope this information is helpful.

Respectfully,


Richard W. Clark
NIAMS Office of Communications and Public Liaison
31 Center Drive, MSC 2350
Building 31, Room 4C02

Sunday, December 5, 2010

Read the panned response from Mr. Rice, UK Department of Health.

Those of us involved in the letter writing campaign for worldwide ME/CFS received the same response. Of course, they will not admit to getting caught with their hand in the cookie jar. According to those in a better position than I, these responses are unfounded and untruthful. If you have had your finger on the pulse of XMRV, you will be outraged.


December 3, 2010

Our ref: DE00000566856

Dear Ms Cooper,

Thank you for your email of 9 November to Andrew Lansley about xenotropic murine leukaemia virus-related virus (XMRV) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). I have been asked to reply on Mr Lansley’s behalf.

Whilst the Department of Health agrees with the World Health Organization’s classification of CFS/ME as a neurological condition of unknown cause, it has many different potential causal factors, including those of a neurological, endocrinal, immunological, genetic, psychiatric and infectious nature, which have been investigated, but the diverse nature of the symptoms cannot yet be fully explained.

More research into the causative factors of CFS/ME is needed. The Medical Research Council (MRC) has recently identified and prioritised research topics where high-quality proposals should be encouraged. This exercise involved both experts in the field of CFS/ME and research leaders in aligned areas. Further information on this work can be found on the MRC website at:
www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm
.

Regarding the recent interest in XMRV, its possible role in the causation of CFS/ME remains a source of debate within the scientific community. A recent study in the USA reported that XMRV has been detected in a number of CFS/ME sufferers. The results of this study have not been replicated in Europe. An ongoing research programme characterising XMRV at the MRC’s National Institute for Medical Research recently investigated the basis for this finding. The study, which was funded jointly by the MRC, the Wellcome Trust and the CFS Research Foundation, failed to replicate the findings of other studies in this area and found no association between XMRV and CFS/ME.

In addition, an expert subgroup of the National Expert Panel for New and Emerging Infections (NEPNEI) met in May 2010 to consider all available evidence about XMRV and conduct a risk assessment. The subgroup concluded that XMRV can infect humans but there is currently no evidence that it causes human disease and that, on the evidence before the group, no public health action is required at this time. Since the subgroup meeting in May there has been no new scientific evidence that would change these conclusions. In July, the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO), similarly decided not to recommend further measures at present. Both groups will continue to monitor the situation.

Both NHS Blood and Transplant (NHSBT) and Health Protection Agency (HPA) experts concur with the views expressed by NEPNEI and SaBTO and also recognise the need for further research on the prevalence of XMRV in the UK. In a recent unpublished pilot study conducted by NHSBT/HPA, a series of 540 randomly selected English blood donors were screened for XMRV and none were found to be infected.

I hope this reply is helpful.

Christopher Bird
Customer Service Centre
Department of Health

Celeste's Website

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