Thanks for the info.
I had an UK NHS test which was negative but I had heard they were unreliable, I think it's unlikely I have Lyme I rarely went to places where I could get bitten and I have no recollection of ever being bitten. I'm just after the single most reliable test preferably cheap to rule it out.
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Should I just get a western blot? Any recommendations where to get one from?
Thanks
1) Sero negative Lyme doesn't mean you don't have it or do have it either. Catch 22.
If your body fails to make antibodies no test will detect it.The UK NHS test is indeed useless because it has a sensitivity rate of 56%. This means if 100 people catch a bus to a blood draw centre who are confirmed antibody positive through other means, 44 of them go home with a false negative test result. In other words, the NHS test isn't fit for purpose even if your body does make antibodies. Antibodies are good. You want a strong antibody response not a null response or the infection goes un-noticed and goes out of control and ends up damaging your brain, some argue this is 'ME'. Indeed Borrelia untreated can lead to neuroborreolosis and this itself can cause an Encephalomyeltis. ME uses the same term, just bolting on 'Myalgic'. Chronic Lyme also can cause 'Myalgic'. So until we know what ME is, and can differentiate it from the contested Chronic Lyme, no one knows what the hell is going on. The governments response is to tell BOTH groups they are neurotic and to try and capture them within CFS/MUPS/PUPS/PPS and prescribe CBT and GET.
2) CDC agrees Lyme (like CFS) is a clinical diagnosis, but again, all NATO allied countries ignore this advice.
For example. The issue in the UK is the CDC's own website makes it clear a negative test is not necessary for a clinical diagnosis of Lyme (CFS is also a clinical diagnosis remember), but the NHS ignore this and won't diagnose Lyme with a negative test, aka seronegative Lyme. See my points above, and we end up in one big mess as paradoxically the most severely ill won't make antibodies and need treating first on high dose IV antibiotics for months
before they then test positive. AKA
The Lyme diagnostic Paradox.
THE FUNDAMENTAL PROBLEM WE ARE ALL IN TOGETHER,YET WE THINK AFFECTS THEM NOT US!
1)CFS are told they are neurotic,to do CBT/GET and they will recover in time - a lie.
CFS thus doesn't exist. No funding is given for research, only 'fatigue' research.CFS isn't 'fatigue' though CFS is a label given to humans by others who don't believe they are organically ill (Fukuda Criteria states no EXPLAINED reason for Fatigue can be present). Well ME and Lyme like disease, has about 50+ proven reasons using tests.
Of note, Fukuda CDC CFS does not require testing. Strange that....
2)CFS patients aren't screened for Lyme - outrageous as CFS and Lyme are highly similar.
3) Government deny Chronic Lyme anyway, and only accept Lyme that is treated within a few weeks with AB's.
No appropriate levels of funding is given for research. Chronic Lyme patients told they have CFS or depressed etc. (Exactly what happens to CFS patients).
4) No diagnostic test is funded or backed by Government for either illness. Both patient groups used in propaganda in the media or in professional circles as patients who 'believe' in physical cause as mentally ill and not worthy of help, unless this help is psychiatry.
5) Lyme or Lyme like tests are unreliable even for the tiny percentage who do get tested - more people left in limbo.
6) Private tests ignored or denied by Government. CDC famously claimed the Advanced Labs Lyme Culture test is contaminated, yet never even tested this theory, just presumed it. Incredible disingenuous behavior and quite reckless. They also claimed the CFS retrovirus assay in 1990 by Elaine De Freitas was contaminated, and also didn't test this, again, just a claim, a story, they massaged into fact that media can use against patients who 'believe' they are organically ill.
7) If the infection has evaded your immune system you will test false negative anyway which means?
Tens of millions with a Lyme like disease really could end up diagnosed with a presumed neurotic (CBT/GET) fear or exercise CFS when they don't. Ergo,'CFS' doesn't exist as 'CFS' but as a untreated post infectious, autoimmune disease that is neglected and untreated.