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Lyme disease bacteria eradicated by new drug in early tests

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Re: Lyme disease bacteria eradicated by new drug in early tests

#121

Post by matthewdgreen »

caycep wrote: post #91
PragmaticPulp wrote: post #2

Note that they're carefully dancing around the elephant in the room: As far as I know, no one has ever demonstrated that Lyme spirochetes survive a course of standard antibiotics (Emphasis mine): > Standard treatment of Lyme disease is oral antibiotics, typically doxycycline, in the early stages of the disease; but for reasons that are unclear, the antibiotics don't work for up to 20% of people with the tick-borne il…

In my (brief) experience with PTLDS sufferers, there have been a couple of disturbing realizations/experiences: 1) it seems that "chronic lyme specialists" are physicians who realized that each patient they diagnose with "chronic lyme" is potentially a cash cow. In that they can be persuaded to pay out of pocket for regimens of IV infusions of antibiotics costing up to tens of thousands of dollars (and which make no…

I don’t doubt everything you’re saying, and that unscrupulous physicians are genuinely taking advantage of their patients. However, as someone with a family member who was recently diagnosed with a (largely untreatable) autoimmune disease, I want to explain why patients become so desperate that they’re willing to try anything. The basic problem here is that anyone who goes online and reads about their condition (eg PTLDS) will find ample scientific evidence that there’s a real condition there — however, a huge majority of medical practitioners aren’t as caught up on the research as their desperate patients, and will often express skepticism that the condition even exists. (Note that this is different from acknowledging the condition is real and being unable to offer a treatment.) This destroys credibility in the conservative medical establishment, and makes it much easier for charlatans to make inroads, simply by acting like they believe the patient. My point here is that a little empathy can go a long way to protecting patients from this outcome.

Re: Lyme disease bacteria eradicated by new drug in early tests

#122

Post by asdkjh345fd »

loeg wrote: post #90
rendall wrote: post #59

Earlier quoted context omitted.

A public entity, whose stated mission is to provide timely and accurate information to the public, actually lies to the public in order to influence some third-hand outcome, such as less hoarding: a net positive? I would argue no, not a net positive at all. To start, nearly everyone now distrusts the CDC (and WHO) to deliver accurate information.

That is not their mission, stated or otherwise. The repeated emphasis is on health and saving lives. > CDC works 24/7 to protect America from health, safety and security threats, both foreign and in the U.S. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, CDC fights disease and supports communities and citizens to do the same. > CDC increases t…

>The repeated emphasis is on health and saving lives.

And they just killed thousands of people, potentially tens of thousands. They know, as we have known for decades, that even simple, home made, cloth masks provide a huge reduction in the spread of respiratory diseases.

>I think the same people who were inclined to distrust health organizations probably continue to do so, and the folks who were inclined to trust health organizations probably continue to do so as well.

Anecdotally, that does not seem to be the case. I don't know anyone who trusts the CDC or WHO now, and a bunch of people now think the WHO is a Chinese organization trying to deliberately kill Americans, and the CDC has been infiltrated and subverted by them. That seems like a major barrier to effectively preventing future epidemics.

Re: Lyme disease bacteria eradicated by new drug in early tests

#123

Post by power »

PragmaticPulp wrote: post #13
James_Henry wrote: post #11

Earlier quoted context omitted.

>> A recent study in humans demonstrated that B. burgdorferi DNA was identified in PTDLS patient by xenodiagnosis but unable to culture viable spirochete17. In about 85% of Lyme arthritis patients, B. burgdorferi DNA was detected in synovial fluid by polymerase chain reaction (PCR) testing The previous sentence is also important: >Many research studies has [sic] shown that B. burgdorferi establishes persistent infect…

I'll review the citations in this study once again, but the evidence for lingering spirochetes in humans is always thin. Much of it relies on indirect testing that is difficult to replicate or prone to laboratory errors. I'd love to be completely wrong and for this to be a game-changing solution, but after years of following this research I'm suspicious of the idea that persistent yet mysteriously undetectable (in hu…

I'm interested in your opinion of the citations too. They purport to show persistence beyond standard treatment in mice, dogs, macaques and humans, the latter via xenodiagnosis and PCR. PCR is pretty direct.

Re: Lyme disease bacteria eradicated by new drug in early tests

#124

Post by Adrig »

matthewdgreen wrote: post #121
caycep wrote: post #91

Earlier quoted context omitted.

In my (brief) experience with PTLDS sufferers, there have been a couple of disturbing realizations/experiences: 1) it seems that "chronic lyme specialists" are physicians who realized that each patient they diagnose with "chronic lyme" is potentially a cash cow. In that they can be persuaded to pay out of pocket for regimens of IV infusions of antibiotics costing up to tens of thousands of dollars (and which make no…

I don’t doubt everything you’re saying, and that unscrupulous physicians are genuinely taking advantage of their patients. However, as someone with a family member who was recently diagnosed with a (largely untreatable) autoimmune disease, I want to explain why patients become so desperate that they’re willing to try anything. The basic problem here is that anyone who goes online and reads about their condition (eg P…

You're so right... I've been twice in "medical wandering" where doctors couldn't figure out what I had. First time was IBS years ago when the condition wasn't well known (2 years of pain and loneliness before I knew what I had), second time was for lyme and I'm currently in PTLDS in the middle of the war between the 2 sides.

I can't stress enough how angry I am at some doctors I met, that had so little empathy and so much ego. Not only their incompetence allowed my condition to worsen and make the recovery harder and longer, they made me question my sanity and lose hope without caring a little bit about how it would make me feel. If it wasn't for the support of my loved ones, it would have been the loneliness and despair that would have killed me.

The only reason I haven't fallen into the "alternative medecine" world is because the ones I have met have been even more bullshit. But at least they cared (and for most, not in a predatory way. They genuinely wanted to help). No wonder so many people can fall into predatory practices when left alone like I was.

Re: Lyme disease bacteria eradicated by new drug in early tests

#125

Post by FranciscusG »

PragmaticPulp wrote: post #74
vimy wrote: post #33

Earlier quoted context omitted.

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease. >RESULTS: Motile spirochetes identified histopathologically as Borrelia were detected in culture specimens, and these spirochetes were genetically identified as Borreliaburgdorferi by three distinct polymerase chain reaction (PCR)-based approaches. Spirochetes identified as Borrelia burgdorferi were cultured from the blood of seven subje…

> Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease. This paper is from Marianne J Middelveen, who is well known for embracing quackery and producing questionable papers. Her earlier claims that Lyme is a sexually transmitted disease were quickly dismissed, though not before generating a lot of noise in the media: https://www.aldf.com/wp-content/uploads/2016/12/Lyme-Borreli... She also w…

You're right about the quacks and the delusions. I have auto-immune issues after a Bb infection and after three years of high-dosed Doxycycline I still tested positive for IgM (active infection). Tested by a German state-accredited reference lab. I'm self employed and never asked for disability money, never kept going to doctors to try to solve the issue. I now have CFS and Rheumatoid Arthritis and when I stop taking Doxycycline (I try that all the time, I hate taking pills), I get severe neurological problems, such as incontinence and my breathing stops all the time and many other symptoms such as extreme tachycardia in rest, aggression etc. Something is wrong. Does Doxycycline manage my CNS inflammation or are there still spirochetes?

Re: Lyme disease bacteria eradicated by new drug in early tests

#126

Post by FranciscusG »

megous wrote: post #34
mrfusion wrote: post #17

Earlier quoted context omitted.

Sorry I meant IgM not IgG.

The page says that: "Positive IgM results should be disregarded if the patient has been ill for more than 30 days." The reason may be this: https://www.sciencedirect.com/science/article/pii/S1198743X1...

But they give no scientific arguments for that. They simply voice an ill-argued opinion that basically amounts to that they do not BELIEVE in IgM antibodies for Bb s.l., even though the test objectively does show them in a large number of people diagnosed and treated for Borreliosis.

Re: Lyme disease bacteria eradicated by new drug in early tests

#127

Post by cc81 »

HeadsUpHigh wrote: post #119
hinkley wrote: post #36

Earlier quoted context omitted.

Lyme disease talk just makes me think of Nicholas Zakas and then I get bummed out. I know there's a guy, or maybe he represents a group of researchers, who thinks that Chronic Fatigue Syndrome is caused by inflammation in the brain, either due to some undetectable infection, or just a misfiring that is a lingering effect of some other insult (sounds to me like a histamine response aka allergy). If your body thought y…

Smart talking aside it's possible and relatively easy to identify microbes without growing them. When an immuno-suppresive is effective at reducing symptoms you know it's an autoimmune disorder. You can even find specific anti-bodies in some cases. >You could really ask the same question about Crohn's or IBS. No you couldn't. They are clearly auto-immune disorders. Out of curiosity, do you have any formal training on…

IBS is "clearly not" as it is a diagnosis based more on symptoms (many different) and there is no clear understanding of the cause behind it.

And if you look at IBD such as Crohn's or Ulcerative Colitis then sure.

Re: Lyme disease bacteria eradicated by new drug in early tests

#128

Post by bregma »

wetpaws wrote: post #72
octodog wrote: post #69

Earlier quoted context omitted.

Wrong. It's much more nuanced than that. Surgical masks are not effective at preventing infection. They are effective at spreading infection. New data on asymptomatic spreaders means than public health authorities are considering changing their advice. The default assumption would then be that everyone has it, and should therefore wear a mask to prevent spreading it.

>Surgical masks are not effective at preventing infection. They are effective at spreading infection. This is a common misconception, for which CDC is also partially the one to be blamed. Laboratory tests find that improvised cloth masks block 60 – 80% of virus particles Most experts in the early 2000s agreed that these masks were probably better than nothing. https://bmjopen.bmj.com/content/bmjopen/5/4/e006577.full.…

> Laboratory tests find that improvised cloth masks block 60 – 80% of virus particles

How many virus particles do you need to become infected? Is 20% of the load in a typical aerosol droplet from an asymptomatic infected person above or below that critical number?

Re: Lyme disease bacteria eradicated by new drug in early tests

#129

Post by bregma »

oblib wrote: post #62

This has no bearing on the tests of this new drug, but it's worth noting that the best prevention is getting ticks off of you quickly. I know this because I live in a very tick infested area (Ozark Mountains) and very few people who've grown up here in families that have lived here for generations get lyme disease. I don't personally know anyone who has. Since I was kid in the `60s, and long before that, parents here…

I live in a tick-thick area. I get dozens of bites every year, and I know you don't feel them and they can get places you don't always check every day (in your ear canal, in the inguinal area, on the backs of your upper arms where you can't see in the mirror without doing extreme gymnastics). The beggars will ride in to the house on your clothes and bite you during the night.

I'm diligent with checks but I've been infected with Borrelliosis. Had the rash, had the Doxycycline 100 mg BIDx21.

Hate those guys.

Re: Lyme disease bacteria eradicated by new drug in early tests

#130

Post by nerdponx »

dumbneurologist wrote: post #117

I am a neurologist. My main comments are the same from a thread about lyme on HN 7 months ago [1]. If you follow it to it's terminal conclusion, it shows that neurologists had a standard course of therapy for lyme. The alt-lyme community insisted that it was too short, and you needed long term treatment (with a duration based on their own experiences/treatment regimens). So conventional medicine studied the longer co…

They're comparing babesiosis to malaria, not Lyme.

A lot of the "Lyme-literate" discussion (from a layperson's perspective) talks about: 1) tick-borne coinfections like Babesia, 2) Borrelia "hiding out" in parts of the body where antibiotics don't circulate easily like nerve tissue.

I don't typically see either point addressed in these kinds of discussions. Is the 2nd one even plausible biologically?

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