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NIH New TBD Plan

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Posted 10/10/2019 4:18 PM (GMT 0)
NIH just released its new TBD plan. Seems to be a step in the right direction if they do what’s written, only big disappointment is it doesn’t include Bartonella as a TBD.


https://www.niaid.nih.gov/sites/default/files/NIH-Strategic-Plan-Tickborne-Disease-Research-2019.pdf
Posted 10/10/2019 4:46 PM (GMT 0)
4. Promote research to improve treatment for all forms of TBDs, including studies to develop effective therapies to treat symptoms that persist after TBD treatment, therapies for non-infectious TBDs, and new antimicrobials.


I’m not sure I like that wording.
“... effective therapies to Treat symptoms that persist after TBD Treatment”

Hopefully they’re not meaning therapies to just manage symptoms like antidepressants, pain killers etc - and calling it PTLDS

(Post treatment lyme disease syndrome )
Posted 10/10/2019 4:55 PM (GMT 0)
There is a LLMD in Ireland - not sure if he’s taking names again for his waitlist.

Dr L
Posted 10/10/2019 5:30 PM (GMT 0)
"The NIH and WHO all those guys aren't the ones to watch. People like Rajadas, Kinderlehrer, Jemsek are the men that are paving the way for this disease to be taken seriously. Jemsek, being sewed for millions is in all honesty quite heroic. Especially that he continues to treat people. At least these men are trying. They are making a difference too."


Jemsek has moved is practice 3 times....and I read he also went bankrupt more than once.
In addition to that, his wife and daughter both had cancer.
It's amazing - the resilience he has.
Posted 10/10/2019 7:23 PM (GMT 0)

Chiledog said...
NIH just released its new TBD plan. Seems to be a step in the right direction if they do what’s written, only big disappointment is it doesn’t include Bartonella as a TBD.


https://www.niaid.nih.gov/sites/default/files/NIH-Strategic-Plan-Tickborne-Disease-Research-2019.pdf

I haven’t read this yet, but I do remember reading the TBD working group’s document of recommendations, and there was no mention of bartonella there either.

To me, not naming bartonella is criminal.

My PCP had never even heard of bartonella or cat scratch disease. If your average doctor is that ignorant about bartonella, who’s going to recognize it? Bartonella has the most recognizable symptoms besides the borrelia bullseye rash (which everyone doesn’t get) and spots with spotted fever (which apparently is less common). Psych symptoms are also big with bartonella. If regular doctors don’t know how to recognize it, what do you think they will do - push psych meds or pass the patient on to psych doctors.

All doctors should be informed of the DOZENS of symptoms of EACH infection. I haven’t seen anything yet that makes me think doctors are going to be much more informed and equipped to recognize tick borne infections than they are now. Medical officials only want to acknowledge symptoms they can see or measure by some test. The vast majority of our symptoms will never fit in their stupid little boxes.

Furthermore, just saying that Lyme can cause neurological symptoms isn’t enough. They need to list dozens of examples, because it’s the neuro stuff we experience that is so incredibly unbelievable to those arrogant idiots.

Sorry for the rant!
Posted 10/10/2019 8:49 PM (GMT 0)
My desire is not for your average doctor to be in charge of treatment for Lyme and coinfections other than acute cases to get people started until they can get to a Lyme specialist.

My heartfelt desire, that I believe is in the best interest of all parties, is for ALL doctors to be fully aware of the huge array of symptoms that Lyme and coinfections can cause, understanding that all symptoms do not have to be present and that no list is all inclusive. Symptoms should be listed in both medical terms and in a way that patients might describe it. The goal is for Lyme/co to be RECOGNIZED quickly so the patient can swiftly move on to a Lyme specialist. Let the Lyme specialist deal with testing.
Posted 10/10/2019 8:54 PM (GMT 0)
^^^^ - yes WBF

They gps/pcps would send you to a LLMD/LLND for diagnosis and treatment - just like they refer to endocrinologists, etc
They don’t need to treat it.

That’s what my dr did - but unfortunately - a lyme doc wasn’t on her list - she sent me to specialists that ruled everything out (except frozen shoulder) and I got worse... and worse... sigh

Now she will offer someone abx when they come in with a tick bite or suspected tick bite -

She has also phoned me and asked if she could give my phone number to someone who tested positive for lyme via Igenex (and had symptoms)

I know she’s a gem - worried she will give up her practice - as she has another business on the side...
Posted 10/10/2019 9:33 PM (GMT 0)
One other thing I might add, is that patients should be informed that their symptoms may be due to tick borne infections. We all know that there are multiple avenues for treatment and they don’t all involve a Lyme specialist. It will still be important for people with suspected Lyme/co to do their own due diligence in educating themselves and choosing a course of treatment.

If mainstream medicine improves their recognition and communication regarding these infections, there won’t be enough doctors to treat all the patients. Patients will have to take matters into their own hands until the medical community gets up to speed.
Posted 10/10/2019 10:13 PM (GMT 0)
I agree. Lack of information is the greatest barrier for patients searching for explanations for their illness.

It would probably be very effective if there were public service announcements on TV, internet, billboard signs connecting symptoms to Lyme/co with a website or something where people can find more information. It would be great if the Lyme community could do this sort of thing, but I imagine the powers that be would shut it down in a hurry and make sure that informative websites and forums disappeared or became near impossible to find.
Posted 10/10/2019 10:37 PM (GMT 0)

JovaLyme said...

WalkingbyFaith said...
My desire is not for your average doctor to be in charge of treatment for Lyme and coinfections other than acute cases to get people started until they can get to a Lyme specialist.

My heartfelt desire, that I believe is in the best interest of all parties, is for ALL doctors to be fully aware of the huge array of symptoms that Lyme and coinfections can cause, understanding that all symptoms do not have to be present and that no list is all inclusive. Symptoms should be listed in both medical terms and in a way that patients might describe it. The goal is for Lyme/co to be RECOGNIZED quickly so the patient can swiftly move on to a Lyme specialist. Let the Lyme specialist deal with testing.

I actually have to disagree to a certain extent WBF.

I'm not even medically trained and I know more about Lyme than most average doctors.

It doesn't need to be specialist. There are good tests for it already in existence and if Lyme was actually a significant part of medical training we would all be a lot better off. It would be fantastic if you could just see your local doctor, get a test done and then be treated correctly.

Not only that, but a lot of people suffering immeasurably and misdiagnosed with all the conditions this is frequently misdiagnosed as would also be relieved of their suffering. It's a mainstream illness that affects millions and it should be treated by mainstream medicine. At the moment it's almost like an underground movement or cult in the medical profession and that's because of those at the top of the tree telling everyone in mainstream medicine that Lyme either doesn't exist or is no more serious than a cold.

I really do dread to think how many people who actually have Lyme have been misdiagnosed with something else and will never be cured because they are being treated for the wrong thing.

===========

Acute lyme yes - chronic - no.

Treating Chronic Lyme takes a lot of knowledge - when you factor in the coinfections.

I think it would need to be a specialist -
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