Wanda22 said...
As I mentioned before, my daughter has had the best tests and neither one has diagnosed her except Cyrex Lab in 2020. The dr who ordered it wasn’t treating her for Lyme. He didn’t know what was wrong and just tested.
Yes, we all understand that even the best tests for lyme are not perfect - but this fact has no bearing at all on whether the "spit test" is valid or not for Lyme.
The validity of the "Spit test" depends solely on its own merits - or lack of them.
which is what i am trying to establish, with your help.
Wanda22 said...
To your concerns, I get it but can you explain the improvements that my daughter has gained, in a week, while using Lyme N?
who can say with certainty what is going on in any individual case - and i certainly wish you and your daughter every success in your battle with this disease
but if you are asking me - "what other possible explanations could there be?".....there are several possible explanations.
first, symptoms of these diseases also go up and down from day to day and week to week - so what you have reported could be improvement due to treatment - but it could just as easily be just the up and down variations of the condition itself.
second, the effect of hope, expectation and belief should not be underestimated.
All humans are susceptible to these effects.
They are not imaginary - but very real measurable effects that are quite well studied.
for instance the UK, one of the most advanced nations in the world, has stopped doing many of the knee surgeries it used to do - after proper studies showed no benefit over a simulated surgery.
The people who had simulated surgery had the same approx. 30-50% improvement in pain and function afterwards as the real surgery patients - demonstrating the dramatic effects possible from this mind body effect.
This effect was till present when the patients knew half of them were getting the sham surgery - belief they had had the real surgery was correlated with improvement. in follow up surveys the majority believed they were the ones who had the real surgery (even though that is an arithmetic impossibility).
i would also say, a week is a very short time indeed in terms of chronic lyme treatment - very few proven treatments, provide any real improvement in such a short time scale.
Perhaps some amelioration of symptoms is possible from a supportive type treatment - like anti-inflammatory drugs or herbs - but active treatment almost always involves things getting worse for some weeks initially - before it gradually gets better.
If you now consider a scenario where all the highly influential people surrounding the patient want to believe in the treatment, are all invested in it emotionally and financially, and all want to see signs confirming that they are right to do so, there is a powerful magnification of this effect.
Real improvements are possible through the effects of belief alone and positive bias will tend to make these seem even larger than they are.
Again, i am not here to rubbish your chosen doctor or treatment - i set out mainly to try and understand some aspects that were puzzling to me - but for those that visit and read these accounts of expensive fringe treatments - i do think they should be mindful of the fact that there is a whole industry out there making a living from people who are sick with Lyme or Lyme-like chronic illnesses.
So, i do think a dose of healthy scepticism is needed to navigate this extremely challenging situation - and to help with that i think it worth highlighting the factors mentioned above so they may at least be considered when making these important decisions.
Again, i applaud your efforts to support your daughter in this most challenging of illnesses,
and only wish to help you and others navigate this extremely difficult challenge that everyone here has found themselves in.
all the best!
Post Edited (Garzie) : 12/5/2022 7:16:25 AM (GMT-8)