Hi guys, thanks for the responses! I have been fortunate enough lately to be able to work part-time from home, so sorry for the delayed reply.
Basically, what I mean about
the sensitivity thresholds is it seems like they have set the bar for a positive too high. The high prevalence of false negatives makes me think they require quite a bit of color in order to call it a positive. However, there could be other issues, like Lyme patients' antibodies being low at certain stages of disease progression. I would have assumed this to be the case for late-stage Lyme but the paper Pirouette linked says that early stage has the same problem. (Thanks Pirouette for that study!) But honestly, I think the problem is more their sensitivity than our crappy antibodies.
That's great to hear that there's movement on this issue in Canada. I know that the US's IDSA is a huge barrier here so it would be great if other countries allow a little more room for alternate perspectives. And it's also great that you have a supportive GP!
I can't say I was never skeptical of the LLMDs, because as I've mentioned, they don't have the ability to back up their position with very strong clinical evidence. A *lot* of the reason that I decided to put my faith in them is because the community of Lyme patients advocate for them so strongly. I figured that if so many patients think that's the best way to go, there must be something to it. Once I got to know the LLMDs and their staff, I realized that they're still scientific in their approach, trying different combinations of drugs, different supplements, making observations, seeing what works. It's just that they can't publish a lot of that data.
But yes, I treated for about
three years, and ultimately I am still left with some very severe symptoms. Some symptoms got better: brainfog, air hunger, balance problems, and on and on. I used to have so many weird symptoms.
Now, it's mostly fatigue and orthostatic intolerance. I can't be on my feet for very long, and even sitting straight upright is difficult. I'm able to use a laptop in bed, which is the only reason I can work. Each year, I'm able to do less and less. It's getting to the point where I'm losing the ability to keep myself fed: shopping for food, cooking meals, etc. I'm not making much money so I have to live with family anyway, and they're taking over a lot of those daily tasks.
It's really hard. I'll be posting soon to ask for help, because it's terrifying to imagine where I will be in 5 or 10 years.
Your WB is very interesting. You're actually one band shy of the elusive CDC diagnosis on your IgG.
My first WB was in 2011:
IgG 18+, 23-25+, 41++, 58+ and a few ind's
How long have you been ill? For people who have had Lyme in their system for a long time, their immune system weakens, and they produce less antibodies. My IgG reactivity went *way* down from 2011 to 2014. Interestingly, my IgM reactivity stayed about
I'm glad to hear that you're improving, though. That's wonderful news, and to be honest, the best sign that you can hope to see. So much of what LLMDs do is just based on symptoms - try this and see if you get better, if not, then try that.
I actually found you guys just through Google. I was looking into cistus tea and found an old thread on here. I'm looking into herbal self-treatment at this point, so I wanted to ask if you guys can point me in the right direction. (I haven't made that post yet but I will soon!)
Thanks for clarifying what you meant about
the ELISA in the original quote. I definitely didn't intend for this to be a defense of the ELISA, really just an explanation of why it probably made sense at the time that it was developed. However, I do think that the sensitivity thresholds they use are off, and it seems to me that should have been apparent to them from the beginning.
But yes, I absolutely agree that it's indefensible for the CDC to continue to recommend the ELISA. It's also ridiculous that they continue to ignore the bands that were used in the failed vaccine, because those bands are highly specific for Lyme and should absolutely be used for diagnosis. But they just pull the "not for diagnosis, just for monitoring" card.
So this reveals a problem in our medical system - doctors regularly rely on a source for diagnotic criteria that is explicitly not intended to be used for diagnosis. I'm sure that they do so because it's the most authoritative, centralized source of information. It isn't realistic for the average PCP to go looking up diagnostic guidelines in the medical literature for every disease. However, unless the government created some other resource for diagnostic criteria, the only other source of criteria would be organizations like the IDSA.
I'm not a conspiracy theorist, but I am cynical as all hell. It seems to me that the way that the IDSA and CDC keep sticking to their guns on these issues has to do with money. But I don't know enough about
all the things you listed in (C) to understand their motivations. The Lyme vaccine is deader than dead, and I'm assuming that any lawsuits from it have long been settled. So where is the incentive to stick to these criteria? Profits from running tons and tons of ELISAs? Wouldn't the patent have expired by now? Or dog vaccines? Same thing on the patent there too. I just don't get it. It just seems like there's a more complex situation going on that I know nothing about
. It seems like you know a lot more about
it than I do.
Post Edited (biscotta) : 10/11/2017 9:39:09 PM (GMT-6)