Project Lyme Video - New FDA approved Lyme Test - Claims 100% sensitivity!

OK
at least the costs are manageable

but just be aware positive then negative results later on serologic test may be ( are likely to be ) completely meaningless - or in fact worse than meaningless - because if one thinks they actually mean something - and that affects treatment decisions - it is likely to send you in the wrong direction

as far as anything i have read is concerned - and i have dug pretty deep - once positive for lyme - a person may be positive for life - regardless of ongoing infection or not - or may have ongoing infection and present with various positive or negative results over time - we have seen that from members here in the past

remember the serology test is not measuring infection - but what bits of ones immune system are doing - and in chronic infections that is often a bit of a random number generator

this is true in the average case - and even more likely to be true in the case of someone like yourself with a lot of immune mediated stuff going on

also - logically - from our discussions you haven't really been able to treat the infections effectively - due to adverse reactions - so how would it have gone away by itself

so i am still not clear what they think they are achieving - whether results are consistent - or not consistent.

my concern is that either or both Dr's are labouring under some misapprehension about testing and, as well as causing stress around results, could actually be counterproductive to treatment direction.

anyway - i don't want to overstep - its clearly your choice and at least you are aware of the issues

Still having trouble reading, now see IGeneX involved. Even though I have used that lab many times would like to know results have been replicated many times independently. Lately I've been questioning my IGeneX results, even as recently as a few months ago asked my LLMD I'd she still trusted their process and results. She said she did still trust their process.

Update - a few days ago the projectlyme youtube channel administrator responded to my requests for clarification by simply posting a link to the pilot study we have already reviewed above.

i have responded with the following pointing out the contradiction between what the presenter claimed and what that study shows - and asking for actual clarification:

Garzie's Comment said...
@projectlyme8087 This is rather disappointing. The paper quoted indicates that the sensitivity was actually somewhere in the range 84% to 100% - and that was not actually possible to define it further due to the small sample size used (see Table 5). Now, an 84% sensitivity means that 1 in 6 patients would receive a false negative result from this test (be told they are negative – when in fact they are infected) - While the claimed 100% means effectively no-one would receive a false diagnosis. This illustrates just how misleading it is to claim a solid 100% sensitivity when the data says it is just as likely to be 84%. If actual justification exists for claiming 100%, I for one, and I am sure many others, would be keen to hear it – but based on the above - and without such data – such claims would represent obvious false advertising.

This brings us to the point of incentives and the distance between the presenter and the product. It has now been 2 weeks since the request for clarification of the presenters’ commercial arrangements with the test manufacturer. Surely the presenter either has or doesn’t have a commercial arrangement with Igenex. Why would it take over two weeks to answer such a simple question - or should viewers interpret the silence on the matter to, in itself, speak volumes?

Clearly, it’s in patients’ interests, and therefore in Project lyme’s interest, to clarify this point. After all, if patients cannot trust patient advocate groups - who can they trust?

Has Dr Burrascano responded to your follow up in any way – if so, perhaps you can share what was the response?


Will project lyme actually bottom this out?

of course, project lyme may not respond at all - but given that their mission statement is all around supporting patients, since it's clearly in patients interests to know how well a test performs, and to know if the patient advocacy group they are following can be trusted to present the unvarnished truth - i had hoped they would be up to the task.

i will update here if there are further responses

note - the comments are not visible on the video page unless you select "newest first" in the "sort by" drop down at the top of the comments page. The default is to show you whatever the algorithm decides

Rampage said...
......... You should consider starting your own lyme patient advocacy group.

Funny you should mention that......

In order to manage my own recovery, ( I am at around 75% recovered now) I have had to dig deep into the scientific literature, the LLMD literature and the wider health literature in general.

I have dedicated 9 years of my life to deepening my understanding of not only lyme disease itself – but all of the surrounding areas of health that intersect with it, which covers a very wide array of topics like diet, gut healthy, autoimmunity, exercise, supplements, herbal medicine, mind body techniques, even microscopy etc.

Even so, to successfully navigate a way through this illness, knowledge on its own is not sufficient. One needs a sense of proportionality and perspective to be able to make effective decisions.

This is especially challenging for people who initially find themselves with lyme or suspected lyme - swimming in a sea of lyme denial, conflicting information, different treatment options, test interpretations – all while suffering a bizarre and unsettling array of symptoms - some of which undermine that fine balance and proportionality that is so essential to finding the right path forward.

I agreed to moderate here out of my wish to help people struggling from this challenging disease and to try and pass on some of the knowledge I have gained.

But it's largely a thankless task, and the forum here is in any case, sadly, dwindling away.

So, as my recovery progresses and I have more energy available to do some form of gainful employment, in the spirit of "The Obstacle Is The Way" (ref Marcus Aurelius) I have been working in the background on setting up my own patient advocacy and consulting service as a way to help people more directly on a one-to-one basis while putting the knowledge I have gained and the 10 years I have otherwise lost to this illness, to good use.

In the UK, where I live, especially, there is a near complete lack of support for Lyme patients as its regarded as an almost non-existent disease. Primary care GP’s are trained in the NHS system to be dismissive of it even as an acute disease, let alone of chronic Lyme disease being possible.

After that people typically fall into a void as there is no network of LLMD’s here (only one in Dublin, Ireland) and all private MD’s in the UK were trained in the same NHS system that denies Lyme disease.

As a result, people here currently have nowhere to turn for dependable fact-based support, or proven experience in navigating the minefield that is Lyme disease.

The service I am proposing would include one on one support with topics like, how and where to get tested, interpreting test results, navigating diagnostic challenges, assessing treatment options, supportive lifestyle changes, navigating recovery-blocking factors, navigating the health system, the challenges of self-treating, emotional support tools, or just someone who has been through it themselves to use as a sanity check or sounding board for patients own ideas.

I must make clear - I am not a medical doctor – so the above would not constitute medical advice – more a two-way discussion with someone who has relevant knowledge and experience focussed on helping the Lyme patient find a way forward more quickly and easily than they would do by navigating alone.

There will also be a website with free resources, booking system, FAQ's, and a few other things in the works.

(Sorry for the long post – took longer than I thought to explain where I am coming from)

Excellent Suggestion. Thank you Rampage.

Its certainly something that i will add to my list of topics.