[1]Unfortunately the best available testing is good at finding early stage lyme infections, but not good at all with later stage lyme.
[2]So should chronic lyme be treated based on symptoms and patient history only, without bothering with testing that may or may not be useful? That isn't a facetious question. It's a valid point of view and one that I am interested in your take on.
[3]Or do you believe, like much of mainstream medicine, that there is no such animal as chronic lyme disease and that lyme-like symptoms, in absence of a positive mainstream test, must have some other cause?
[4]I think your comparison of alternative testing to healing crystals was unfortunate and needlessly provocative. These tests may have yet to prove useful (or not), but such is the case with all scientific discoveries at one time or another. That doesn't mean they are comparable to voodoo.
Hi there. I might have to ask a couple of questions before responding, in order to avoid any confusion. Also, you've raised some new issues which haven't been discussed before, so it might be worth checking on what evidence there is, so that we're both aware of it.
Sorry this is a bit long a rambling. It's a complicated matter, I've had other things to do while replying, and I'm knackered. Best.
[1] Is there any evidence that this is true? My understanding was that 'mainstream' Lyme tests are weakest at detecting very early infections.
[3] (Some points on 3 first).
'Chronic Lyme' can mean lots of different things. 'Mainstream' medicine acknowledges that Lyme can go untreated, causing ever more serious symptoms and harm to the patient's health. This is small 'c' chronic Lyme and uncontroversial.
There now seems to be growing acknowledgement that even when treated, Lyme disease can still leave patients with on-going problems. It seems to be that these patients have been badly treated in the past, and that there has not been sufficient contrition from the 'mainstream' doctors who gave unwarranted reassurance to patients concerned about the impact Lyme had upon their health. Currently there is no good evidence that these on-going symptoms are a result of ongoing infection - it is possible that they are even though their is no evidence for this, or they could be a result of damage already done, of an on-going immunological response, or any number of other problems. These is still no evidence that 'alternative' Lyme testing is of value for this group either.
Thirdly, we have the group of patients who suffer from a range of different symptoms and have been told that they have Chronic Lyme, but have no other evidence of having Lyme disease. I see no good reason for choosing to associate these people's health problems with Lyme. We've had a long period of 'alternative Lyme' proponents arguing that they have access to tests which show that these people's symptoms are associated with Lyme infection, but if this were the case they could easily produce compelling evidence to support their claims, and they have not done this. Instead, when 'alternative' Lyme testing has been assessed, it has been found it be seriously flawed.
[2] I don't think that the alternative Lyme testing is of any value. I think that seeking treatment for Lyme without having a 'positive' result following one of these tests is probably more sensible than paying for a test lacking in any evidence of value first, but that's not to say that I think that this is a good idea. Even for those patients with a confirmed diagnosis of Lyme (by 'mainstream' testing) that suffer from ongoing symptoms after normal treatment, there is only very weak evidence of value for the long-term treatments available (generally negative results with one or two weak positives I think).
[4] When we're discussing concern that people may not seek testing that has no evidence of value, I think it's fair to ask 'when is it acceptable to say that a potential medical intervention is not worth the money and trouble'? Do we need to get to crystal healing? If we're always afraid of not pursuing a medical intervention, then we could end up spending all of our time and money on possibly helpful medical interventions that have no evidence of value. That doesn't sound like a good idea to me.
I think that there are lots of people, in mainstream and alternative medicine, happy to make money from unwarranted claims of expertise, and that we as patients should be pushing back, and asking for some evidence of some value before we spend our time and money on their 'medicine'. It should be up to patients to decide how they want to live their lives, and that requires a commitment to informed consent, and making available the evidence which is used to justify the claim that a particular intervention is worthwhile.
