After a 4 year journey with CFS and many related health issues that have turned our life upside down, my fiancé and I have recently come round to the conclusion that what has made us both so ill is likely to be blastocystis hominis - or something very similar.
Initially, not knowing any better, we followed the conventional medicine approach thorough our local GP who did all the basic blood tests and found nothing amiss despite us being at 20% of our prior capacity mentally and physically, after much prodding he eventually referred to infectious diseases specialists who also found nothing. So, we reverted to a paleo lifestyle and functional medicine approach - which improved our situation significantly. However, we were still v ill.
On this functional health approach, we of course started with the gut and got ourselves tested 3x complete stool analysis with parasitology with both Drs Data and Biolab in parallel to give us what we thought would be the best chance of detecting a pathogen if present
The test showed some overgrowths of normal flora and “some” or “many yeasts” in each sample so we embarked on a gut treatment protocol involving diet, an antimicrobial protocol including berberine, allicin, undecylenic acid, and other natural antimicrobials along with probiotics for 12 weeks. This was a very comprehensive program including a gut rebuilding phase and gentle reintroduction of foods afterwards. In general, this made us feel much worse for the entire time. Then much better for 2-3 weeks afterwards which ten relapsed to as it was before.
A follow up stool test with parasitology found all overgrowths now in the green and yet we were still v ill. In functional medicine failure of this type is usually a sign that there is an underlying problem with infection, like a tick-borne disease, or some such issue preventing recovery. So we went on another long journey looking into many rare diseases and treatments for CFS.
One of these investigations was Ubiome gut explorer. Our gut microbiome was only slightly different from the average. No obvious pathogens and nothing way out of whack. But one of the interesting things we found were that the previous stool tests had clearly mis-identified several of the species it claimed were overgrown (the specificity of the PCR based microbiome testing is much higher)
This, together with the pattern of our illness, has made me wonder if the stool tests by Drs Data and Biolab are in fact reliable for Blastocystis. After looking into it in some detail I found 6 or 7 studies on PubMed looking at the various methods of detecting it and found that direct microscopy (the method the stool tests use to detect ova or parasites) is typically only 20 to 60% accurate at detecting it when it is in fact present. It is also highly dependent on the training and experience of the microscope operator. This is a particular problem with Blastocystis as the organism takes several forms, depending on its life stage and its environment and each of these look very much like something else - the most common form looks like and is often mistaken for yeasts (which were found in our sample).
So, the long and the short of it is that I am now looking for a lab that can provide PCR based testing for this organism in stool samples for patients in the UK.
I know of at least 2 companies that make PCR test kits, and these are demonstrated to be highly specific and sensitive (around 100% for both)
The two companies are Certest in Spain for Blastocystis
And the RIDA®GENE Dientamoeba fragilis kit from Biopharm
I am in communication with the manufacturers to try to find labs that way but, this is proving very longwinded so I would be very grateful if anyone knows of a lab offering pCR based tests for these organisms.
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