Comment by GiorgioG | Hacker News Reader

Comment by GiorgioG | Hacker News Reader

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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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