"Patients tend to be women, middle-aged, worriers, analy retentive people who think a lot about their health and bowels".
Medical and lay views of Irritable Bowel Syndrome. Dixon-Woods et al. Family Practice (2000)
Irritable Bowel Syndrome:
IBS affects up to twenty percent of the population. It is costly to both patient and society because patients with IBS see more doctors (half of all visits to GI specialists are for IBS), undergo more medical tests, miss more work days and are hospitalised more frequently than patients with many other illnesses. (IBS Handbook. 2nd Edition 2006. Gastroenterology Society of Australia).
Traditionally IBS is considered more of a nuisance illness than one having serious consequences, and GI specialists may hold pejorarative opinions about patients with IBS. [Dixon-Woods M, Critchley S. Fam Pract. 2000].
Regardless of its reputation as a mere 'nuisance' illness, IBS can have such a severe impact on the lives of sufferers that in one UK study 38% of the 100 participants had either contemplated, or attempted suicide because of their bowel problems. Patients with IBS were also more likely to consider suicide than patients with Inflammatory Bowel Disorder (IBD). Miller V et al. Clin Gastroenterol Hepatol. 2004
Various theories about the cause of IBS over the years:
- Psychological disturbance (Lea & Whorwell, 2003);
- Abuse in childhood (Talley et al, 1998);
- Chemicals in water (A.K. Susheela, et al. 1992);
- Learned sickness behaviour associated with gift giving in childhood (Whitehead et al. Dig Dis Sci. 1982)
- The psychological need of sufferers to pass a large stool. (Achord, JL. 1979).
IBS & Parasites. The Evidence:
- Over 50% of IBS patients have B.hominis Yakoob J, et al. Parasitol Res. 2010)
- Over 20% of IBS patient have D.fragilis (J.Williams et al. Biomedical Scientist. 2002)
- The symptoms of B.hominis, D.fragilis and IBS are identical (Windsor 2007))
- IBS symptoms resolve when D.fragilis is successfully treated (TJ Borody, et al. 2002)
- Standard diagnostic testing (one unfixed sample) will miss many infections in symptomatic people (Yang & Scholten, 1975)
IBS symptoms are chronic and bothersome, and they have a profound negative impact on patients. quality of life (i.e., affecting sleep, personal relationships, travel, diet, and sexual functioning). IBS imposes a substantial economic burden in direct medical costs and in indirect social costs such as absenteeism from work and school and lost productivity, along with the less-measurable costs of a decreased quality of life. The annual cost of IBS treatment in the United States has been estimated to be between $1.7 billion and $10 billion in direct medical costs (excluding prescription and over-the-counter [OTC] drug costs) and $20 billion for indirect costs.
The burden of illness of irritable bowel syndrome: current challenges and hope for the future. J Manag Care Pharm. 2004 Jul-Aug;10(4):299-309. Case Western Reserve University School of Medicine, Cleveland, OH , USA
When one stool test is one too many:
The subject of diagnostic testing has been a topic of continuing debate by IBS experts because, according to the following:
Extensive diagnostic testing rarely identifies organic GI disease in patients with IBS. IBS - Review and What's New: Making a Positive Diagnosis of IBS. Medscape General Medicine. 2006;8(3):20. Amy Foxx-Orenstein. Mayo Clinic.
In 2002 The American College of Gastroenterology's (ACG) Functional GI Disorders Task Force recommended that:
Routine performance of diagnostic testing is unnecessary in patients who meet the symptom criteria for IBS.
Routine diagnostic testing with complete blood count, serum chemistries, thyroid function studies, stool for ova and parasites, and abdominal imaging is not recommended in patients with typical IBS symptoms and no alarm features because of a low likelihood of uncovering organic disease. (2009)
Doctors with concerns about diagnosing IBS on symptoms alone are assured that the probability of finding inflammatory bowel disease, colorectal cancer or infectious diarrhea in a patient with typical IBS symptoms, is less than 1%
D.fragilis or B.hominis - two parasites shown to colonise the digestive tracts of more than half of patients with IBS (Yakoob J, et al. Parasitol Res. 2010) are never mentioned.
Neither is there any acknowledgement that conventional stool testing is less than 50% diagnostic.
Why the disconnect?
A Blasto. infected individual recently wrote this to me:
"It completely baffles me why the entire concept of parasitology seems to be ignored, bypassed and circumvented by the very people who are supposed to be there to provide the answers. It doesn't make any sense why this should be so. What is it about this subject that renders it beyond the scope of the medical profession to embrace as a fully legitimate realm of modern medicine in which they can work and offer help? It's as if any diagnosis, no matter how bizarre, is preferred in order to avoid considering parasites - anything in fact that will prevent a discovery of parasites. It appears that a conspiracy of ignorance, silence and sheer bloody-mindedness has rendered the whole subject utterly remote from the parameters of everyday consideration. And yet, an everyday subject it most certainly is, with millions suffering worldwide for the want of a few simple medications. These are the sacrificial lambs enduring endless sickness at the alter of cold medical ego. Such simple solutions, yet it's like asking for the keys to Aladdin's Cave, or a slice of moon. One can become very angry and cynical indeed.".
Medical ego - or conflict of interest? Is medical science being circumvented by vested interests - namely pharmaceutical companies who invest in drugs to treat IBS. Much IBS research is sponsored by major drug companies - the very same pharmaceutical giants who produce drugs to treat the symptoms of IBS. Obviously curing patients is far less profitable than keeping them hoooked on drugs to ease one or two IBS symptoms.
If Blasto. and D.fragilis were being properly diagnosed at least 50% of the IBS market would disappear.
The symptoms of IBS and the symptoms of B.hominis and D.fragilis are identical. Windsor. 2007.
One study showed a possible link between Blastocystis and IBS (with 95 IBS patients and 55 control cases) where there was an infection rate of 46% in IBS patients and only 7% in the control group was shown. There have been several other studies which have shown the high number of Blastocystis positive individuals in the IBS group compared to the control group with rates of 71%, 76% and 49% with less than 20% in the control groups [74-76]. (Update on the pathogenic potential and treatment options for Blastocystis sp. Roberts et al. Gut Pathog. 2014; 6: 17.)
For a mere $US500 you can read about the commercialisation of the IBS market in: “Novartis’s Zelnorm Suspension - Impact On The Irritable Bowel Syndrome (IBS) Treatment Landscape”.
When I told him I had been diagnosed with D fragilis and B hominis he said they were not the cause of my problems. He said, as most of them say, that they are harmless to the body. He took stool and blood for testing once again and found Giardia in it. So, besides fragilis and hominis I also have giardia. He gave me Flagyl and I don't know what to do. This doctor is considered the most expert in tropical disease in this country. (US 2010)
"It's obvious that you can't be relied upon to be objective about the results of an experiment or clinical trial if you stand to make money from a particular outcome". SMH article Potential Conflic in research linking back pain and infections. May 28 2013
NICE, not nice for patients
The advice of the National Institute for Health and Clinical Excellence (NICE), a UK government funded body who publish reference guidelines for medical personnel who deal with IBS patients, mirrors the advice of pharmaceutical industry funded bodies:
"Fecal ova and parasite testing for patients with typical IBS symptoms is unnecessary".
Even if they did recommended stool testing most patients with D.fragilis and Blasto. would test negative because:
Diagnostic procedures employed currently in laboratories around the UK are not optimal for the detection of D. fragilis and B. hominis. D.fragilis and B. hominis: neglected human protozoa. The Biomedical Scientist. July 2007. Pages 524-27.
When all the recommended tests are negative, the NICE handbook suggests that patients undergo psychological therapies, including hynotherapy for stubborn, unmanageable IBS.
These sort of recommendations are common in the IBS literature, and have contributed to a mushrooming of psychological studies which emphasise the role of stress or neuroticism in IBS:
Psychological symptoms were found to be more common in patients with functional gastrointestinal complaints, but it is debated whether they are primarily linked to GI symptoms or rather represent motivations for health-care seeking. Upper gastrointestinal symptoms, psychosocial co-morbidity and health care seeking in general practice: population based case control study.Bröker LE. BMC Fam Pract. 2009 Sep 9;10:63.
Psychiatric comorbidities as anxiety disorders and mood disorders are common in patients referred for IBS. The patients with personality dysfunction and(or) anxiety were more likely to suffer somatoform disorders. A gastroenterologist should grasp a thorough knowledge and make appropriate therapeutic recommendations for those patients.
Psychiatric comorbidities in patients referred for irritable bowel syndrome. Zhonghua Yi Xue Za Zhi. 2011 Jul 19;91(27):1886-90.
An Axis I disorder coincides with the onset of GI symptoms in as many as 77% of patients. A higher prevalence of physical and sexual abuse has been demonstrated in patients with irritable bowel syndrome. Whether psychopathology incites development of irritable bowel syndrome or vice versa remains unclear.
Irritable Bowel Syndrome. Medscape article. Jan 13. 2012.
In this article we approach medically unexplained physical symptoms from a psychiatric perspective and discuss the common features that unite multiple unexplained symptoms or functional somatic syndromes as a class. Medically unexplained physical symptoms in medical practice: a psychiatric perspective. Escobar 2002. Environ Health Perspect. 2002 Aug;110 Suppl 4:631-6.
This is the effect it has on patients:
A 15 year old diagnosed with Giardia, E.histolytica and D.fragilis still had symptoms after finishing Flagyl and tetracycline. This problem earnt her a session with a psychiatrist:
"Today I had a meeting with my psychiatrist which did not go very well. i started telling him about how sick i've been with the throwing up and diarrhea and cramps and everything and while telling him this I started to cry.
He said he was very concerned about my depression and said he wanted to put me in a psychiatric hospital as he did not believe that i was actually physically ill and started in on the same spiel about how stress can cause my physical symptoms. And then said he didn't understand why i would be so willing to take anti parasite medications and yet be so resistant to anti depressants...when i reminded him that i had taken them in the past and they hadn't worked he said he didn't think i gave them a good enough shot.
When I reminded him that the parasitologist had isolated three parasites in me (giardia, DF, and Entamoeba histolytica.) he said 'lots of people have parasites and manage to function, work, and socialize'. Truly spoken like a person who probably never felt the symptoms of a parasite! I told him i absolutely refused a psychiatric hospital admission but if he wanted to admit me to a hospital to find out why i keep throwing up and having diarrhea that was different. Now he wants to have a session with my parents so he can convince them my illness is all in my head!"
I've received thousands of similar emails over the years, including one from a sick and desperate mother of two children who contacted me about her family's recent D.fragilis diagnosis whose symptoms had been diagnosed as IBS. The illness destroyed her marriage. Her husband cited his wife's ongoing health problems as a significant contributing factor in the breakdown of their marriage in the divorce proceedings. She wrote that she has "no self esteem left" and is "too tired and depressed to fight with Doctors again about this chronic, unsolved problem the children and I are having". (USA. 2000)
Surely there is a moral imperative for the medical community to come to some sort of consensus agreement on treatments for Blasto. and D.fragilis, instead of condemning patients to years of unnecessary illness.
Read about the potential consequences of long term infection here.