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Comment by dumbneurologist | Hacker News Reader

I'm a neurologist, which means I specialize in diseases of the brain, spinal cord, and nerves.

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.

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I am genuinely interested in an elaboration: what is the direct implication of what you are saying? 1. That chronic lyme disease does not exist? 2. That chronic lyme disease and can be diagnosed very reliably 3. Other (please elaborate further?)

Thanks for sharing your expertise.

The research that shows persistent Lyme is real is piling up but the medical community seems slow to accept this fact.

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...

The biofilm claim surprises me a lot especially in the second one. Honestly their conclusive claim is very far fetched and rather unrelated to their study of the pathways (did you read the paper ?), the journal is very bad (IF of the journal : 3, it's an open access one so you can bet the greatest disruptive papers won't be there), and it seems to me they talk about lyme because their study is on the borrelia family and it makes a shitty paper more interesting.

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 gold standard in microbiology for diagnosing an infectious disease has always been to culture the organism alive. Despite notorious difficulties in culturing Borrelia burgdorferi, in about 30 studies this organism has been cultured alive from patients despite at least standard antibiotic therapy, and in many cases after antibiotics far in excess of what is deemed curative by IDSA and CDC. If the pathogen that causes a disease is still present in conjunction with symptoms compatible with that infection, it would appear to me that these ‘fundamental questions about the cause of long term symptoms’ should have been answered a very long time ago. To add insult to injury, recent studies from Tulane, Johns Hopkins, and Northeastern University all demonstrate that we can’t even kill Borrelia in the test tube with the currently recommended antibiotics. What are the chances that a second disease of mysterious etiology but with the same symptoms as the first disease, would come and replace the first disease when there is published evidence that the pathogen which causes the first disease persists despite both short and long-term antibiotics? There are numerous chronic bacterial infections which require long-term combination antibiotic therapies: Tuberculosis, leprosy, coxiella endcocarditis, brucellosis, Whipple’s. Why should Lyme be different?

The last link in my previous post is very enlightening in how badly Lyme has been mismanaged so far.

The best available scientific studies were conducted by conventional medical science, and show there is no benefit. It's telling that, at the time, "long term" treatment was measured in weeks. After it was demonstrated that there was no treatment effect, the goalposts were naturally pushed back by the chronic-lyme advocates, and now it needed to be months.

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).

I guess those of us who were bitten by ticks and have been sick ever since are just imagining our illnesses? Why is it that the medical establishment is fine with TB requiring 6 months of antibiotics, but because you can't believe that tick-borne diseases may take months to treat?

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.

> I guess those of us who were bitten by ticks and have been sick ever since are just imagining our illnesses?

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.

> But you're right chronic tick-borne illnesses don't exist.

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.

https://news.tulane.edu/pr/study-finds-lyme-bacteria-can-sur...

Your link makes my point perfectly: doctors are open-minded, and have conducted rigorous investigations using meaningful clinical endpoints, and cannot substantiate the anecdotal reports of improvement in spite of a very diligent search. It states:

  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

Where the references are:

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 tracked down those studies and the treatments tested were from 30 days to 12 weeks - hardly what I would consider 'long term therapy' that's currently advocated/practiced by LLMDs.

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.)

> the treatments tested were from 30 days to 12 weeks - hardly what I would consider 'long term therapy' that's currently advocated/practiced by LLMDs

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.

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