4 ms·

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 undiagnosab

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.

GiorgioG 7y ago
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.
- all_blue_chucks 7y ago
  > 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.
- appleflaxen 7y ago
  > 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.
  - GiorgioG 7y ago
    https://news.tulane.edu/pr/study-finds-lyme-bacteria-can-survive-after-antibiotic-treatment-months-after-infection https://news.tulane.edu/pr/study-finds-lyme-bacteria-can-sur...
    - dumbneurologist 7y ago
      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
spac 7y ago
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.
vimy 7y ago
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 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/ 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&fbclid=IwAR3rqcG5XnIygoXc_-l5MSxVelUV3u4jlnZVBfJTErfReK9YLTh52HVlT1E 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-cocktail-persister-lyme-bacteria.html 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/10.1186/s12974-018-1381-4 https://jneuroinflammation.biomedcentral.com/articles/10.118... Disulfiram–breakthrough drug for Lyme and other tick-borne diseases? https://www.lymedisease.org/disulfiram-kinderlehrer/ 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-meeting-international-standards-for-lyme-and-relapsing-fever-borreliosis-patients/10009294 https://waset.org/Publications/obstruction-to-treatments-mee...

GiorgioG 7y ago

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.

all_blue_chucks 7y ago
> 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.
appleflaxen 7y ago
> 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.
- GiorgioG 7y ago
  https://news.tulane.edu/pr/study-finds-lyme-bacteria-can-survive-after-antibiotic-treatment-months-after-infection https://news.tulane.edu/pr/study-finds-lyme-bacteria-can-sur...
  - dumbneurologist 7y ago
    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

spac 7y ago

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.

vimy 7y ago

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 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/ 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&fbclid=IwAR3rqcG5XnIygoXc_-l5MSxVelUV3u4jlnZVBfJTErfReK9YLTh52HVlT1E 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-cocktail-persister-lyme-bacteria.html 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/10.1186/s12974-018-1381-4 https://jneuroinflammation.biomedcentral.com/articles/10.118... Disulfiram–breakthrough drug for Lyme and other tick-borne diseases? https://www.lymedisease.org/disulfiram-kinderlehrer/ 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-meeting-international-standards-for-lyme-and-relapsing-fever-borreliosis-patients/10009294 https://waset.org/Publications/obstruction-to-treatments-mee...