as per the article on Lymedisease.org https://www.lymedisease.org/hhs-unveils-sweeping-lyme-plan/
U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. today announced a series of major initiatives to strengthen the nation’s response to Lyme disease and other tick-borne illnesses.
HHS unveils sweeping plan to combat Lyme disease and advance treatment
From the Dept. of Health and Human Services
To strengthen the nation’s response to Lyme disease and other tick-borne illnesses HHS actions include a multi-million-dollar pilot program focused on tick control, up to $2.5 million in innovation challenges, funding for NIH researchers to combat alpha-gal syndrome, and a public-private collaboration to help patients connect with experienced providers.
Secretary Kennedy delivered these announcements during a press conference in New Hampshire — one of the states hardest hit by Lyme disease — after convening a roundtable with state lawmakers and Lyme disease advocates as part of his “Take Back Your Health” tour.
“Millions of Americans battling Lyme disease and other tick-borne illnesses have spent years searching for answers, treatment, and support,” said Secretary Kennedy.
“Today, the Trump Administration is launching one of the most ambitious federal efforts ever to combat Lyme disease by accelerating research, expanding innovation, and improving care for patients and families. We are going after this disease at its source, driving faster diagnostics and new prevention strategies, and delivering the urgency and action Americans deserve.....”
Kennedy is on record saying chronic Lyme patients will not be "gaslighted" by their doctors any longer.
and some of the measures do seem to make sense:
-a small prize fund to encourage use of existing patent data and AI to help diagnose cases sooner
-another for drug repurposing for treatments ( new drugs take many years and appro $50m to gain approval)
-awareness campaigns
so perhaps this is the tide beginning to turn....
to my slightly jaded eyes the announcement seems a little light on concrete deliverables and critically - serious funding
but the public private sector partnership appears to be something with ILADS - so that is credible - and could be useful
what are your thoughts:
tide starting to turn - or just lip service ??
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
I'm starting my first week of iv abx. It *looks* like medicare under rfk is paying for all of them with no restrictions. It's just the first week so far so but hopefully I won't get some nasty surprise bill later.
that's interesting Bailey
i am not familiar with the system in the USA - but was under the impression that it has in the past been very difficult if not impossible to get appropriate antibiotic treatment via any mainstream provider.
do you think there are special circumstances in your particular case making this possible - or is it more just a case of the political regime changing?
i can see that making doctors more comfortable to prescribe - but wouldn't have thought it would influence the insurers much?
who decides what gets covered under medicare - i guess i was assuming its essentially an insurance scheme with the premium paid by the government ?
i am mainly interested as the UK, and other countries, will likely follow whatever the USA does - eventually...
my latest experience with the UK GP who after assuring me the NHS has changed since i last dealt with it and persuaded me to re-engage - seemed to want to help - but then wrote to a rheumatologist for advice - who didn't see me or even my file as far as i can tell - and then wrote back to the GP saying - "no good evidence for benefit of antibiotic treatment for chromic Lyme disease" and basically to treat as per fibromyalgia.
i wrote back providing lots of evidence clinical and otherwise of benefit of treatment with antibiotics with 20+ references from top peer reviewed journals and institutions.
at which point it all became about "...the guidelines..." refused any treatment got very flustered and bundled me out of her office!
i suspect the mechanism for change will be - CDC finally changes stated policy ( suspect this will take some time yet to be formalised and fully aligned) after some years when other countries feel confident it will not be back peddled by whomever gets into office next - will gradually move in that direction also
but sadly this could still take many years.
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
i am not familiar with the system in the USA - but was under the impression that it has in the past been very difficult if not impossible to get appropriate antibiotic treatment via any mainstream provider.
do you think there are special circumstances in your particular case making this possible - or is it more just a case of the political regime changing?
i can see that making doctors more comfortable to prescribe - but wouldn't have thought it would influence the insurers much?
who decides what gets covered under medicare - i guess i was assuming its essentially an insurance scheme with the premium paid by the government ?
i am mainly interested as the UK, and other countries, will likely follow whatever the USA does - eventually...
my latest experience with the UK GP who after assuring me the NHS has changed since i last dealt with it and persuaded me to re-engage - seemed to want to help - but then wrote to a rheumatologist for advice - who didn't see me or even my file as far as i can tell - and then wrote back to the GP saying - "no good evidence for benefit of antibiotic treatment for chromic Lyme disease" and basically to treat as per fibromyalgia.
i wrote back providing lots of evidence clinical and otherwise of benefit of treatment with antibiotics with 20+ references from top peer reviewed journals and institutions.
at which point it all became about "...the guidelines..." refused any treatment got very flustered and bundled me out of her office!
i suspect the mechanism for change will be - CDC finally changes stated policy ( suspect this will take some time yet to be formalised and fully aligned) after some years when other countries feel confident it will not be back peddled by whomever gets into office next - will gradually move in that direction also
but sadly this could still take many years.
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
A problem that I've had with commercial insurance (not medicare) in the USA is that they will pay for the first prescription, but there is a quantity limit and once I hit that limit, either they wouldn't pay at all, or they sent me a letter saying I had to order from a specific pharmacy and have it shipped to me. This was for pills, not IV. I've never taken IV abx, so I don't know how that works.
Another thing they did with mepron specifically was say it was covered, but I would have to pay full price until I hit the deductible. Since this cost more than using goodrx, I did that instead, but then it didn't count toward the deductible.
Another thing they did with mepron specifically was say it was covered, but I would have to pay full price until I hit the deductible. Since this cost more than using goodrx, I did that instead, but then it didn't count toward the deductible.
Oh gosh Garzie, that's rough.
When I did IV abx years ago, I had private insurance. I think we had to pay for everything. Expenses were astronomical. We couldn't keep it up. I've heard of some companies doing what quinn said where they pay for a month. Looking back it was all nonsensical. I supposedly had a good private plan. In fact someone who worked for the same employer snd I think we to the same doc got all their IV abx covered long term. I think they used the same company but theirs was a family plan and I was just by myself.
When I did IV abx years ago, I had private insurance. I think we had to pay for everything. Expenses were astronomical. We couldn't keep it up. I've heard of some companies doing what quinn said where they pay for a month. Looking back it was all nonsensical. I supposedly had a good private plan. In fact someone who worked for the same employer snd I think we to the same doc got all their IV abx covered long term. I think they used the same company but theirs was a family plan and I was just by myself.
Garzie said...
i wrote back providing lots of evidence clinical and otherwise of benefit of treatment with antibiotics with 20+ references from top peer reviewed journals and institutions.
at which point it all became about "...the guidelines..." refused any treatment got very flustered and bundled me out of her office!
Doctors really don't like it when you challenge them. It's very rare to find an openminded doctor who doesn't mind being corrected and is open to patient input. I'm sure everyone here knows what I'm talking about...
yeah, i think she meant well, but was inexperienced - started off down the path of trying to help - then realised she was in over her head and backed out of it in a bit of a panic when she realised.
I could see in her eyes that she had registered the undeniable evidence in my case - but in the UK there is personal and professional risk for GP's who step outside the guidelines.
in principle they are supposed to be able to use their clinical judgement - but in practice they feel like their job is on the line if they do anything other than the letter of what the guideline says.
not really the GP's fault - the system is broken - the UK NICE guidelines were based on the US CDC guidance. Maybe its persisted so long - despite reviews etc - just due to professional risk eversion - no-one wanted to be the one to put their head above the parapet and make the UK Lyme guidance different to everywhere else - or maybe there were some bad incentives at play.
frustratingly - as far as i can work out - no UK patient groups are even focussed on getting the guidelines changed ....
until then GP's cannot really be taken to task - as they have a watertight defence - " I am following the guidelines"
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
I could see in her eyes that she had registered the undeniable evidence in my case - but in the UK there is personal and professional risk for GP's who step outside the guidelines.
in principle they are supposed to be able to use their clinical judgement - but in practice they feel like their job is on the line if they do anything other than the letter of what the guideline says.
not really the GP's fault - the system is broken - the UK NICE guidelines were based on the US CDC guidance. Maybe its persisted so long - despite reviews etc - just due to professional risk eversion - no-one wanted to be the one to put their head above the parapet and make the UK Lyme guidance different to everywhere else - or maybe there were some bad incentives at play.
frustratingly - as far as i can work out - no UK patient groups are even focussed on getting the guidelines changed ....
until then GP's cannot really be taken to task - as they have a watertight defence - " I am following the guidelines"
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
It still blows my mind that other countries blindly follow the US. I never even knew that until I learned it during my time on this forum. So many atrocities have been committed against humanity in the name of science throughout history. It makes me sick.
Yeah I just used trumprx to get ivermectin. It looked like the best price was through goodrx membership program, but trumprx gave me that price without me needing to pay for that membership. One walgreens was nasty snd just refused to dispense ivermectin altogehter. I ended up calling a different walgreens to get it.