no direct experience here - nor have i heard of it before
I read the website and presentation - it is Interesting and any new efforts to develop better tests are welcome - but no mention of how or if indeed any attempt to measure specificity or sensitivity was done - so very hard to evaluate ........
@serg1942 had this test but it came back negative after years of antibiotic and herbal treatments. He has posted about this so I don’t think he would mind me reporting this. You could contact him for more information.
Miyamotoi is sth different. Spirochetes.
It doesn’t produce a EM circle or rash. It’s assumed to be transferable from mother to child, via breast milk too.
it shares 30% dna w/ borellia’s but it does not cause Lyme disease. Rather a flulike illness. Research from Japan & Russia is worth looking into.
Tested positive in urine, not in blood.
Have a lot of Q’s too ... before plunging into yet again a long heavy treatment.
Phage test with sequencing (to rule out false positives) seems to make sense.
But very careful after all those years to ‘just go for it’ like I used to.
Eliza, your comments are not entirely accurate. Lyme disease can be caused by any of the 11 so far identified species of Borrelia if they cause a pathology in humans, and all of them can potentially do so. The laboratory in Belgium that does the phage testing, Dr Teullières who was involved in designing the tests together with the University of Leicester and my Heilpraktiker in Germany all concur with the fact that any of the Borrelia species have the potential to cause Lyme disease. Moreover, according to the biologist that I spoke to from the Belgium lab, B. miyomotoi is one of more common forms of Lyme disease (60% of their positives are for B. miyamotoi), she also claims it is considered a particularly aggressive form.
Unfortunately the doctors in the so-called health system in many of the European countries are notoriously uninformed concerning the present state of affairs. Most categorically deny that there is any such thing as chronic lyme, they base their acceptance of the disease solely upon the results from the the public health service tests (which are notoriously unreliable and test only for the burgdorferi species), and they refuse to take the claims seriously that Lyme may be undetected by the tests on offer. And when do you find a doctor within the system who does accept the existence of Chronic Lyme they tend to treat it with months (and sometimes years) of antibiotics which often do far more harm than good. Antibioitics is not the effective way to treat this malady in its chronic form when the bacteria are for the most part absent from the circulating blood, protecting themselves with biofilms / cysts from the bodies defenses and antibios or else have entered tissues, cells and the CSF. There are other far more effective and less noxious treatments to deal both with the symptoms and the malady and there are knowledgeable practitioners out there who will effect them if you are willing to seek them out.
The test is one thing, and we debate whether to call it Chronic Lyme or Post-Lyme Treatment Syndrome or whatever, it is the treatment that is proposed on the back of this test is the issue for most concern.
I have heard and read all the claims from RED Labs and Dr Teullières about how this test is more effective than previous ones, my only response to that is: well they would say that wouldnt they. It's a commercial test after all and an expensive one at that.
We have seen these claims before about Lyme tests, the LTT being the most famous example diagnosing people with Chronic Lyme all over the place and packing them full of antibiotics for years on end.
Until the University of Leicester team who are involved with inventing this test publish some peer-reviewed articles on the basis for it, we have to take any results from it with a large pinch of salt and also look at a person's clinical symptoms before undertaking any forms of experiential treatments.
Again I must disagree with you! For me it is certainly NOT Post Lyme treatment as I have never been identified or treated for Lyme before! I have however been ill continuously for almost 8 years now (and I had always assumed it was ME/Fibro) and I have been bitten by ticks in my different countries and continents.
For me, a test which verifies its initial results by DNA confirmatory sequencing to avoid false positives seems pretty convincing to me. I was diagnosed with B. myomotoi. And this now makes greater sense in explaining the frequent pseudo-flu-like episodes I get (as well, of course, with a whole host of other complex symptoms, not least the sense of inflammation and generalised pain and severe head pains ...).
More to the point, however, I most strongly disagree with you that antibiotic treatment is the only treatment to consider post diagnosis. I certainly will not be taking any antibiotics and nor do many of my fellow sufferers with whom I am in contact in France. It is increasingly understood today that in its chronic form antibiotics will not be very helpful because the bacteria is not, at this stage, freely circulating in the blood. This is essentially the reason for its difficulty in being detected as well. Rather they create protective biofilms/cysts around themselves and they enter into tissues and cells and the CNS where they are largely protected from the influence of antibios.
On a personal level, I will be beginning treatment with essential oils and supplements from a Naturopath who has a greatly helped and healed many people with lyme. Then in January I hope to start treatment with a very specific bioresonance technique in Germany with a Heilpraktiker who has developed a system through which he has fully cured many people with chronic lyme over the years (including a woman who has now become his own secretary).
As for Teulières, yes he helped with the research, but I have a very low opinion of him as a doctor or a human being for that matter. He was extremely rude to me and essentially offensive! I believe his "notoriety" status, has gone to his head. I certainly wont be having anything more to do with him. And yes, from what I understand he does essentially plug his patients with antibiotics! As my heilpraktiker in Germany said to me, there is no point diagnosing the disease if you don't know how to treat it properly!