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Posted 12/5/2018 7:23 PM (GMT 0)
not much coverage of this response to the TBD working groups recommendations to Congress.
https://www.aldf.com/wp-content/uploads/2018/11/IDSA-Comments-on-Tickborne-disease-working-group-report-2018.pdf

a little sour apples? its great.
Posted 12/8/2018 7:32 PM (GMT 0)
bump for more views
Posted 12/9/2018 12:32 AM (GMT 0)
At this point, all the research or "science" is not in favor IDSA. Nor the output from HHS TBD WG.

Real curious what congress response will be.

Hope it continues to snowball for IDSA.

Imagine how foolish all the docs will look if/when the old IDSA/cdc mandated guidlines fall to the wayside.

When congress reviews this anyone in their right mind would question how it got to this point
Posted 12/9/2018 2:14 AM (GMT 0)
Funny how they complain about lack of transparency when this is the most transparency I've ever seen from TBD guidelines / recommendations. They have archived videos of their sessions, meeting notes, etc - all freely available to the public. That is basically the opposite of previous meetings where IDSA was a majority stateholder (like Dearborn).
Posted 12/9/2018 2:50 AM (GMT 0)
Also funny how they don't feel the need to provide any sources to prove any of their points. Not suprising though. Why use evidence when you can make claims like "widely accepted scientific evidence" without providing any evidence. And then lobby the CDC to support you and then no one actually reads the study, as they blindly follow authorities.

Look at how rarely the study that is used as a reference to validate the 2 tier test is actually accessed:
https://jcm.asm.org/content/33/2/419/article-info
And I think the majority of people accessing it are Lyme patients who actually read the studies and ILADS dr's who actually read them.
Posted 12/10/2018 6:56 PM (GMT 0)
I agree, there is no transparency from IDSA. i am still waiting to see what their revised guidelines are. they were supposed to be published this year. the year is almost over.

I suspect they wont be published given all the controversy going on with the RICO lawsuit, and now with TBD WB. honestly what type of guidelines could they publish now, they are in a no-win situation.
Posted 12/12/2018 1:33 AM (GMT 0)
"There is clear, widely accepted scientific evidence indicating that a 10-28 day course of antibiotics, depending on the stage of Lyme disease, will kill the Lyme disease bacterium in humans in all but the rarest of cases"

They stated this right after stating they don't have tests that could determine "cure". Seems hard to have incontrovertible evidence of cure when you admittedly don't have a test that assesses cure. Absolute morons these people. This reminds me of a scientific paper I read yesterday that claimed Kratom could be deadly when mixed with other drugs and then went on to list the cocktail that killed people "fentanyl, morphine, datura, propylhexedrine, caffeine, modafinil, carisoprodol, diphenhydramine, o-desmethyltramadol, kratom". Right.... 3 deadly opioids, 2 deadly deliriants, a muscle relaxer, a methamphetamine analogue, a prescription stimulant, and caffeine.... probably the Kratom that did them in... I don't even know if I can take science seriously anymore. What an absolute circus

Post Edited (Psilociraptor) : 12/11/2018 6:40:00 PM (GMT-7)

Posted 12/14/2018 2:35 PM (GMT 0)
I agree. the biggest challenge is lack of diagnostics. if there was a test that was a 100% accurate, this would idiot proof the diagnosis, making it such that any PCP with half a brain could then refer out to a qualified doc to treat. the whole process breaks down here i think. you fix that, and you may prevented a huge population from going chronic.
Posted 12/14/2018 3:40 PM (GMT 0)
I agree with that, but I feel like the diagnostic process is even more fundamentally flawed then that. Improved testing would be nice, but don't we need to figure out what to test for?

The IDSA is still claiming that Borrelia Lonestari, Borrelia Andersoni, "relapsing fever" borrelia's are all harmless. So they are not bothered to develop tests that pick up those. The current testing in the USA for "Lyme" is woefully atrocious for picking up B. Mayonii, B. Garnii, and B. Afzelii. Then we have to consider testing for co-infections.

Even if they improve the B. Burgdorferi testing 10 fold; it will not help patients with any of the other Borellia or co-infections.
Posted 12/14/2018 4:24 PM (GMT 0)
they need comprehensive diagnostics to cover everything. that will take the guess work out.

ideally a direct testing method, thats a panel and not based on antibodies. but even an antibody panel would be better than nothing now.

IDSA clearly doesn't understand yet that Lyme is multi-pathogenic. it seems like their dated thought process is starting to get pushed to the wayside in TBD WG.
Posted 12/14/2018 9:28 PM (GMT 0)

1000Daisies said...
I'm surprised the TBD WG isn't discussed more often here.

I assume this is due to years of inaction by the CDC, NIH, etc. the failed vaccine, etc.

i remain hopeful that this TBD WG will change things for the positive, and dont get hung up on the vaccine component of it. the fact that its a multifaceted group, it seems more heavy on non-IDSA members, and the other government members seem to want to change.

i often wonder too, if the HHS needs to allocate money to something. often times like in a company in annual budget planning, if they dont budget for next years money, they lose it. that it maybe that someone cant justify anymore money on HIV, and internally someone wants to keep the budget in HHS so, they now want to finally focus on TBD. I will be curious to see what happens to the spending on HIV, if the budgets are approved for TBD, the money has to come from somewhere. just a thought
Posted 12/14/2018 11:45 PM (GMT 0)

Psilociraptor said...
"There is clear, widely accepted scientific evidence indicating that a 10-28 day course of antibiotics, depending on the stage of Lyme disease, will kill the Lyme disease bacterium in humans in all but the rarest of cases"

They stated this right after stating they don't have tests that could determine "cure". Seems hard to have incontrovertible evidence of cure when you admittedly don't have a test that assesses cure. Absolute morons these people. This reminds me of a scientific paper I read yesterday that claimed Kratom could be deadly when mixed with other drugs and then went on to list the cocktail that killed people "fentanyl, morphine, datura, propylhexedrine, caffeine, modafinil, carisoprodol, diphenhydramine, o-desmethyltramadol, kratom". Right.... 3 deadly opioids, 2 deadly deliriants, a muscle relaxer, a methamphetamine analogue, a prescription stimulant, and caffeine.... probably the Kratom that did them in... I don't even know if I can take science seriously anymore. What an absolute circus

Ridiculous. A laundry list of pharmaceuticals and kratom is to blame.....

I experienced the ignorance of Psyche docs when my father was treated by a 'geriatric psychiatrist' - he put him on the antipsychotic med: Olanazapine...which is one used when all else fails. My dad was already a diabetic. And once he was on the Olanazpine...they couldn't get his blood sugars down into range.

....and the reason he was put on antipsychotic meds? (He tried several) was because after surgery in the hospital, they gave him Ativan and Zopiclone for sleeping. (my father never had anxiety or sleep issues)
I wasn't aware of this.
After about 6 weeks in the hospital...he went home...and had terrible anxiety....his GP prescribed ativan (to be taken 4 X day...everyday) plus Zopiclone. you can't give someone ativan every day and zopiclone - for six weeks and then nothing....cold turkey.

That was the beginning of the end for him... ended up in the Psych ward...and put on antipsychotic meds and anti-depressants...and he turned into a paranoid zombie.....could barely speak at one point....
Criminal.
This same hospital put him into a diabetic coma - after the Dr. switched up his insulin...and they gave him a dose before bed....without any food.

Sorry for the rant....
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