Say you were diagnosed (via ELISA or Western blot) a few months/years ago with Lyme borreliosis. You take antibiotics for the recommended course, and your health has returned, but your tests are still quite positive. Your doctor(s) recommend continuing the antibiotic therapy.
Would you rather that they terminate treatment despite (a) blood tests turning up positive and (b) symptoms continuing? Are doctors no longer permitted the last word in treating their own patients?
I mean, regardless of the "side" or "stance", this is kind of the oldest, least honest logical fallacy in the book [1] - you're requiring somebody else to disprove existence of something? How, exactly?
Typically, the burden of proof is on the entity making a claim.
>>Are doctors no longer permitted the last word in treating their own patients?
erm... no? I'm assuming there's a more profound intent behind this statement, but as it reads, no absolutely not. Doctors are not researchers, they are (to simplify, for purpose of this discussion) expert [and hopefully experienced] appliers of knowledge gained by others, over generations of hard work.
"In case of discrepancy between sticker and system, the system price will be held correct": in case of discrepancy between some random doctor and accumulated body of knowledge, body of knowledge wins.
For example, if my doctor tells me to ingest my own urine twice a day, and CDC & NIH tell me that is bollocks, the doctor empathically does not hold the last word.
----
As to the particulars of your claims when it comes to Lyme, observationally, people actively "shop" for a doctor that will prescribe them the treatment the patient desires. So the last word here is actually typically the patient's. :|
I would argue here that hycaria is the entity making a claim here: he's arguing that chronic Lyme is nonexistent and essentially fraudulent. The point is that the existence of chronic Lyme cannot be disproved. I'd congratulate you for knowing the concept, but Russell's teapot is completely irrelevant here; if long-term treatment with antibiotics or other therapies is helpful for those who say they have CL, who are you to stop them?
> erm... no? I'm assuming there's a more profound intent behind this statement, but as it reads, no absolutely not. Doctors are not researchers, they are (to simplify, for purpose of this discussion) expert [and hopefully experienced] appliers of knowledge gained by others, over generations of hard work.
This is pretty much completely wrong. Physicians and doctors are a crucial component in the development of new medical knowledge; case studies of patients at family offices and hospitals inform decisions going as far up as the leadership at the CDC. Medicine is a two-way street.
> "In case of discrepancy between sticker and system, the system price will be held correct": in case of discrepancy between some random doctor and accumulated body of knowledge, body of knowledge wins.
I don't know how you drew this analogy, but the logic is a complete farce. Doctors are not robots. If it turns out my appendix is on the opposite side of my body from the medical norm, they don't just chop my intestines off halfway so as to adhere to the "accumulated body of knowledge." Nowhere in science and medicine do you discard real-world data when it disagrees with theory; any doctor will tell you this.
> As to the particulars of your claims when it comes to Lyme, observationally, people actively "shop" for a doctor that will prescribe them the treatment the patient desires. So the last word here is actually typically the patient's. :|
Sure, some doctors will help treat patients who self-diagnose. Wouldn't you argue that this would lead to a higher standard of care, though? Is adherence to standards preferable to a high quality of care? Have you ever read the Hippocratic Oath?
I predicted that I had Lyme after noticing I had Bell's palsy - facial paralysis - a common symptom of borreliosis. Every single test for Lyme, which arrived weeks later, was positive. Would you say that I "shopped around" for a doctor who would give me an "antibiotic fix"?
Why is it acceptable for an aging person to request all sorts of painkillers from their doctor, or acceptable for a patient with late-stage cancer to request experimental and risky therapy from some pharmaceutical startup, but it's utterly abhorrent and should be illegal for someone with Lyme (or whatever) to request, at their own cost, long-term antibiotic prescriptions from their physician?
Why specifically do people like you feel the need to antagonize sick people who are trying to get better?
For the record - I do not have chronic Lyme. Those questions were directed at hycaria.
Two recent free access reviews summing up the issue. Tldr : the very unspecific symptoms are probably real (but not always ie cognitive dysfunction complain that test up normal for age range), probably not because of borreliosis though (since follow up of people who had acute lyme disease brings up a very low number of chronic affection), patients feel unlistened to (sadly always more common and ends up in such defiance towards modern medicine and resort to shady unproven sicknesses and their communities, see electrosensibility too in the same vein), antibiotics are useless.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4440423/
Extract :
As such, treatment of this symptom complex with antibiotics is unlikely to be helpful to patients but does incur substantial risk. This, combined with the impact of excessive antibiotic usage on the development of widespread antibiotic resistance among more potentially lethal pathogens, and the significant health care resource utilization and cost associated with prolonged administration of parenteral antibiotics, makes such treatment ill advised.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/
Extract :
Three research groups have examined prospectively the effectiveness of prolonged antibiotic courses for post-Lyme disease syndromes.57–59,75 All trials had strict entrance criteria similar to the aforementioned definition of PLDS. The Klempner and colleagues58 study reported 2 parallel trials in which their cohort of 129 subjects was divided into seropositive (n = 78) and seronegative (n = 51) arms. Subjects randomized to treatment groups received 30 days of intravenous (IV) ceftriaxone followed by 60 days of oral doxycycline. Those randomized to the placebo arm received IV placebo for 30 days, followed by an oral placebo for 60 days. The primary outcome was health-related quality of life as assessed by standardized instruments (the Medical Outcomes Study 36-item Short-Form General Health Survey [SF-36] and the Fibromyalgia Impact Questionnaire). These instruments were administered at baseline, and then 30, 90, and 180 days. There was no difference in any outcome measure between placebo and treatment groups in either the seropositive or seronegative arm, or in a detailed battery of neuropsychological tests that was published subsequently.75 Although all patients had complained of cognitive dysfunction at baseline (and this was the primary complaint in >70%), objective measures of cognitive function, such as memory and attention, were normal compared with age-referenced normative data. Depression, anxiety, and somatic complaints improved in both the antibiotic and placebo arms groups between baseline and day 180.
The clinical entity of chronic lyme disease which is undiagnosable by conventional medicine and require months and months of antibiotics is pseudoscience. There is a large industry built to pedal treatments to purported sufferers. I don't want to be disrespectful of the people who report being helped by these treatments, but this is exactly the same situation as vaccinations causing autism: people being convinced by "obvious facts" that are ultimately supported by anecdotes but not science.
The medical community can be wrong, for sure (h. pylori is a great example), but we notice treatments that help our patients, even when unconventional (the FDA approval of cannabis to treat epilepsy is the most recent example).
This will eventually reach the same conclusion as the vaccination debate; hopefully with a lower price tag of dollars and lives.
Thanks for sharing your expertise.
Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease: "Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates. The optimal treatment for persistent Borrelia infection remains to be determined." https://www.ncbi.nlm.nih.gov/pubmed/29662016
The Emerging Role of Microbial Biofilm in Lyme Neuroborreliosis: "The early treatment with oral antimicrobials is effective in the majority of patients with LNB. Nevertheless, persistent forms of LNB are relatively common, despite targeted antibiotic therapy. It has been observed that the antibiotic resistance and the reoccurrence of Lyme disease are associated with biofilm-like aggregates in B. burgdorferi, B. afzelii, and B. garinii, both in vitro and in vivo, allowing Borrelia spp. to resist to adverse environmental conditions. Indeed, the increased tolerance to antibiotics described in the persisting forms of Borrelia spp., is strongly reminiscent of biofilm growing bacteria, suggesting a possible role of biofilm aggregates in the development of the different manifestations of Lyme disease including LNB." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/
Precision medicine: retrospective chart review and data analysis of 200 patients on dapsone combination therapy for chronic Lyme disease/post-treatment Lyme disease syndrome: part 1: "We collected data from an online survey of 200 of our patients, which evaluated the efficacy of dapsone (diaminodiphenyl sulfone, ie, DDS) combined with other antibiotics and agents that disrupt biofilms for the treatment of chronic Lyme disease/post-treatment Lyme disease syndrome (PTLDS)." ... Conclusion: DDS CT decreased eight major Lyme symptoms severity and improved treatment outcomes among patients with chronic Lyme disease/PTLDS and associated coinfections.": https://www.dovepress.com/articles.php?article_id=44148&fbcl...
Three-antibiotic cocktail clears 'persister' Lyme bacteria in mouse study: https://medicalxpress.com/news/2019-04-three-antibiotic-cock...
In a new study, researchers from the Johns Hopkins School of Medicine have found evidence of chemical changes and widespread inflammation in the brains of patients with chronic symptoms following treatment for Lyme disease. Imaging glial activation in patients with post-treatment Lyme disease symptoms: a pilot study using [11C]DPA-713 PET https://jneuroinflammation.biomedcentral.com/articles/10.118...
Disulfiram–breakthrough drug for Lyme and other tick-borne diseases? https://www.lymedisease.org/disulfiram-kinderlehrer/
Obstruction to Treatments Meeting International Standards for Lyme and Relapsing Fever Borreliosis Patients: https://waset.org/Publications/obstruction-to-treatments-mee...
Third one is great but it's not a randomised trial with a placebo comparison. It has been done before, placebo shows improvement too (see https://www.ncbi.nlm.nih.gov/pubmed/12821733/). It proves nothing.
I don't have time to take at look at the rest, but you get the idea : it's not compelling.
The last link in my previous post is very enlightening in how badly Lyme has been mismanaged so far.
Test tubes are profoundly inadequate for this kind of study, because the immune system makes a huge difference. Many antibiotics are bacteriostatic (not -cidal), and don't kill the organisms. But that's enough to give the host immune system an edge, and we wipe it out instead of succumbing to the infection.
If there is a benefit to longer treatments, it should be straightforward for the alternative-lyme industry to perform a similar double-blind placebo-controlled trial and prove it.
That's what happened with the "unconventional" example of cannabis for epilepsy, and now it's available to every patient who needs it, and is covered by their insurance. This example just supports the idea that doctors care about their patients, and want effective treatments to be found. When you have a splinter group of doctors who disagree with convention, create a splinter industry on top of it, and market theories rather than publish data, then my default position is going to be skepticism, and I'm going to try to help my own patients find something more promising (though I would never fault them for trying anything: I recognize they are desperate, and the victim of a con is hardly to blame).
It's time for the medical field to actually consider the possibility that prolonged tick-borne illnesses might be real. Is months of antibiotics the best treatment? I don't know, but it's the only treatment option I've been given. It sure beats an army of doctors (2 PCPs, 2 neurologists, rheumatologist, immunologist, and more) trying to convince me there's absolutely nothing wrong with me. Tell my wife, kids and friends that everything's fine - I'm exhausted from the time I get up to the time I go to bed, brain fog, working memory issues, etc. The only test that came back positive was rocky mountain spotted fever (4 months ago) and I've been feeling ill for almost 3 years. But you're right chronic tick-borne illnesses don't exist.
For the record, I would likely believe it was quackery too if I wasn't living proof that it's real.
No, you're imagining the connection between the symptoms and the tick. Even if such a connection is real, the fact that things happened in this order is not evidence of anything.
Why the snarky sarcasm? My comment is hidden now, but I thought I said they do exist, and that the pseudoscience is in the chronic, longterm antibiotic treatments.
But your reaction is exactly what parents of kids with autism said: I saw my child get autism after a vaccination. I am it. It happened to me.
Tick diseases do exist, and they have great (conventional) treatments. It can be very difficult to get the right diagnosis, and for your doctor to make the diagnosis.
There are a lot of people out there selling very expensive and completely inappropriate treatments, and it has created endless confusion on the part of the patients who are suffering. It's unconscionable, and when the patients/victims are so convinced that they campaign for it, it's downright tragic.
Just consider how exhalted Andrew Wakefield was by his patients in the day.
Regardless: I'm sincerely happy that you're getting much better.
Posttreatment LD remains a poorly understood syndrome,
occurring in an estimated 10% to 20% of humans treated
under current IDSA guidelines.30 Multiple randomized,
placebo-controlled studies that evaluated sustained
antimicrobial therapy concluded that there is no benefit
in alleviating patients' symptoms and indicated that long-
term antibiotic therapy may even be detrimental to
patients because of potential associated complications
(ie, catheter infection and/or clostridial colitis).31,
32, 33
Berende, A., ter Hofstede, H.J., Vos, F.J., van Middendorp, H., Vogelaar, M.L., Tromp, M., van den Hoogen, F.H., Donders, A.R., Evers, A.W., and Kullberg, B.J. Randomized trial of longer-term therapy for symptoms attributed to Lyme disease. N Engl J Med. 2016; 374: 1209–1220
Kaplan, R.F., Trevino, R.P., Johnson, G.M., Levy, L., Dornbush, R., Hu, L.T., Evans, J., Weinstein, A., Schmid, C.H., and Klempner, M.S. Cognitive function in post-treatment Lyme disease: do additional antibiotics help?. Neurology. 2003; 60: 1916–1922
Klempner, M.S., Hu, L.T., Evans, J., Schmid, C.H., Johnson, G.M., Trevino, R.P., Norton, D., Levy, L., Wall, D., McCall, J., Kosinski, M., and Weinstein, A. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001; 345: 85–92
I don't have any definitive answers. All I can tell you is, if you felt as lousy as I feel, you'd be willing to try it given the lack of any meaningful treatment options from the current mainstream medicine that has managed to extract a shitload of my money in exchange for mostly blank stares & shoulder shrugs (or my favorite, passing me onto another specialty, resulting in another 2 month wait.)
ahh! there is something here. I't subtle but I think it's a really important process you've described:
Conventional medical experts took the anecdotes and lyme theories, and decided to test "long term" therapy that was being advocated by less-conventional but still well-meaning providers at the time. These were the results: they showed there was no benefit.
So conventional thinking moved on, and the now-fringe thinkers simply moved the goalposts. Any scientist is going to be open-minded about the possibility of something being effective, even if they don't understand it. But at this point there are far better places (meaning "likely to show efficacy") to invest research resources.
And the question we're all asking ourselves is: if the alt-medicine community is so convinced that there is a benefit, why on earth won't they perform a randomized, placebo-controlled, clinical trial. We already did several, and published them. If the alt-lyme community still wants to continue making claims and expect to be listened to, they are going to need evidence.
That seems like it should be uncontroversial to me, but here we are.
Is this civil?
>In 2017, mosquito-borne West Nile virus, which currently infects about 2,000 people annually in the U.S. received $42 million in support from the U.S. National Institutes of Health. Lyme disease, with 20 times the number of reported cases, got half as much, a figure that has changed little in a decade.
Doubling allocations for Lyme research and prevention to $50 million doesn't seem like an unreasonable or overcomplicated request. Congress allocated over a billion dollars for Zika [1] - a disease that something like 10 Americans ever had. How does it make sense that a disease actively affecting 400,000 Americans each year is allocated effectively $0 by the same Congress?
[1] https://www.statnews.com/2016/09/28/senate-approves-zika-fun...
I guess you wouldn't mind if I dumped a bunch of Lyme-carrying ticks in your home, then.
Because while I agree with overall message ("Let's get serious about battling ticks and diseases they spread"), there is a strange mix of scientific/data-based; political/opinion-based; and just plain emotional imploring. It brings up the highly controversial Chronic Lyme topic right front and centre, but then attempts to steer itself ambiguously away from it (essentially, "Whatever the case, we need to fight it"). Can the author really be unaware of the immediate guard that will go up on every side of that thorny issue?