6 ms·

> As for Lyme disease: The actual infection can be treated with a standard course of antibiotics. The infection does not persist indefinitely, although some peo

by moxie 7y ago

> As for Lyme disease: The actual infection can be treated with a standard course of antibiotics. The infection does not persist indefinitely, although some people experience long-lasting effects after the infection is gone. I don't think it's possible to make an absolute statement like this with 100% certainty given the current state of the art. Lyme is a spirochete, and there also seems to be real research suggesting it can grow biofilm to make it antibiotic resistant or resurgent. There are patients who test positive under CDC criteria, take antibiotics, and never see a transition from IgM to IgG. There are also patients who test postive under CDC criteria, take antibiotics, see a transition, but still experience symptoms (what you would call 'long-lasting effects'). In some cases patients in that situation have extreme gland swelling that when biopsied, seem to contain Lyme. Like all of medicine, I think it's squishier than what you're describing. There is also a lot of crazy shit on the internet, but like you say, that's because people are genuinely suffering and have no alternatives.

PragmaticPulp 7y ago
> I don't think it's possible to make an absolute statement like this with 100% certainty 100% certainty is an impossibly high bar in any hard science This is the problem with chronic Lyme communities: They fixate on the "what if", no matter how small the probabilities. Many of these patients might very well have entirely treatable yet unrelated disorders, but their fixation on the chronic lyme infection theories keeps them focused on the wrong treatments. Many doctors have tried endless treatments with high-dose antibiotics, but the clinical studies consistently show no difference vs. placebo. We all need to move on from the chronic lyme infection theory unless/until someone provides real evidence to the contrary. > There are patients who test positive under CDC criteria, take antibiotics, and never see a transition from IgM to IgG. That was me. I tested positive under the CDC criteria, but followup IgG tests were negative. I lucked into a very astute infectious disease specialist who was as up-to-date on the research as I could have hoped for, and she even took the time to walk me through the various theories and studies.
- Vomzor 7y ago
  There only have been a couple antibiotic studies, it's hard to get funding for more elaborate studies because of the controversy. Those studies ignore the research on biofilms and only gave antibiotics for a couple weeks. And even in those flawed studies there was a marked improvement in quality of life for Lyme patients. Let's take the PLEASE[0] study for example. Although significant improvement in health was measured (on average 4.6 points on the SF-36 scale; 3 points is considered significant progress) the results were presented with the headline: 'Long-term use of antibiotics does not benefit long-term complaints of Lyme'. While tens of thousands of patients have been cured by a cocktail of antibiotics taken for several months or sometimes years. This is also what the current in vitro research is showing. Lyme persisters can only be killed by a combination of antibiotics.[1] Like tuberculosis. And it's also what this data analysis of 200 patients shows.[2] >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. And recently we have the spectacular results of Disulfiram.[3] A clinical trial is underway at Colombia University so we won't have offical results until 2021 but all signs point to it being a gamechanger. Lyme communities are full of people with miracle stories after taking Disulfiram. [0]https://www.nejm.org/doi/full/10.1056/NEJMoa1505425 https://www.nejm.org/doi/full/10.1056/NEJMoa1505425 [1]https://www.jhsph.edu/news/news-releases/2019/three-antibiotic-cocktail-clears-persister-lyme-bacteria-in-mouse-study.html https://www.jhsph.edu/news/news-releases/2019/three-antibiot... [2]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6388746/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6388746/ [3] https://www.ncbi.nlm.nih.gov/pubmed/31151194 https://www.ncbi.nlm.nih.gov/pubmed/31151194
- Alex3917 7y ago
  > This is the problem with chronic Lyme communities: They fixate on the "what if", no matter how small the probabilities. The chronic lyme people (e.g. ILADS) are often making recommendations that aren't based on solid evidence, but the reason they exist in the first place is because the CDC recommendations are also bullshit and the CDC isn't doing nearly enough to stem the epidemic.
Someone1234 7y ago
> when biopsied, seem to contain Lyme. What's this a reference to? And what do you mean by "seem" to contain Lyme Disease?
mysticlabs 7y ago
Biofilms and persister cells are the problem with chronic Lyme disease. https://rawlsmd.com/health-articles/understanding-biofilm https://rawlsmd.com/health-articles/understanding-biofilm https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6521364/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6521364/ It's pretty simple, if the disease is able to enter the form where it starts producing biofilms it can use them to evade antibiotics. A patient then must explore treatments to break up biofilms, and eradicate whatever infections or co-infections are present within them. There's medications that do this and more functional methods such as hyperbaric oxygen chambers. The people who have symptoms after antibiotic treatment and the people who relapse after antibiotic treatment still likely contain Lyme disease biofilms and persister cells which are capable of causing a full relapse given enough time and the right conditions. Those who receive early treatment and success with a single round of antibiotics are the lucky ones, and not the standard patient experience. Even people who have been bitten by a tick, immediately started antibiotics, and caught it immediately can still get chronic Lyme disease, especially if their initial round of antibiotics was for too short a duration. There is a lot of shit on the Internet, and what's happening to the people who have Lyme disease is an absolute travesty and crime against humanity due to our corrupt and failing medical system. The actually science and research on this is clear though: biofilms exist, Lyme disease can become chronic due to biofilms and persister cells which can evade antibiotics. Everyone talks about how theres super bugs and infections that evade antibiotics, well Lyme disease is literally a super bug that evades antibiotics and is probably one of the most successful super bugs of our lifetimes and yet people try to deny its capabilities despite countless medical research studies proving otherwise. It's baffling really.
- cpascal 7y ago
  To add: there’s also a cystic form of Borrelia burgdorferi. The bacteria is a spirochete, similar to the bacteria responsible for Syphilis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564911/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564911/ https://en.m.wikipedia.org/wiki/Borrelia_burgdorferi https://en.m.wikipedia.org/wiki/Borrelia_burgdorferi
- 100ideas 7y ago

by moxie 7y ago

PragmaticPulp 7y ago

> I don't think it's possible to make an absolute statement like this with 100% certainty 100% certainty is an impossibly high bar in any hard science This is the problem with chronic Lyme communities: They fixate on the "what if", no matter how small the probabilities. Many of these patients might very well have entirely treatable yet unrelated disorders, but their fixation on the chronic lyme infection theories keeps them focused on the wrong treatments. Many doctors have tried endless treatments with high-dose antibiotics, but the clinical studies consistently show no difference vs. placebo. We all need to move on from the chronic lyme infection theory unless/until someone provides real evidence to the contrary. > There are patients who test positive under CDC criteria, take antibiotics, and never see a transition from IgM to IgG. That was me. I tested positive under the CDC criteria, but followup IgG tests were negative. I lucked into a very astute infectious disease specialist who was as up-to-date on the research as I could have hoped for, and she even took the time to walk me through the various theories and studies.

Vomzor 7y ago
There only have been a couple antibiotic studies, it's hard to get funding for more elaborate studies because of the controversy. Those studies ignore the research on biofilms and only gave antibiotics for a couple weeks. And even in those flawed studies there was a marked improvement in quality of life for Lyme patients. Let's take the PLEASE[0] study for example. Although significant improvement in health was measured (on average 4.6 points on the SF-36 scale; 3 points is considered significant progress) the results were presented with the headline: 'Long-term use of antibiotics does not benefit long-term complaints of Lyme'. While tens of thousands of patients have been cured by a cocktail of antibiotics taken for several months or sometimes years. This is also what the current in vitro research is showing. Lyme persisters can only be killed by a combination of antibiotics.[1] Like tuberculosis. And it's also what this data analysis of 200 patients shows.[2] >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. And recently we have the spectacular results of Disulfiram.[3] A clinical trial is underway at Colombia University so we won't have offical results until 2021 but all signs point to it being a gamechanger. Lyme communities are full of people with miracle stories after taking Disulfiram. [0]https://www.nejm.org/doi/full/10.1056/NEJMoa1505425 https://www.nejm.org/doi/full/10.1056/NEJMoa1505425 [1]https://www.jhsph.edu/news/news-releases/2019/three-antibiotic-cocktail-clears-persister-lyme-bacteria-in-mouse-study.html https://www.jhsph.edu/news/news-releases/2019/three-antibiot... [2]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6388746/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6388746/ [3] https://www.ncbi.nlm.nih.gov/pubmed/31151194 https://www.ncbi.nlm.nih.gov/pubmed/31151194
Alex3917 7y ago
> This is the problem with chronic Lyme communities: They fixate on the "what if", no matter how small the probabilities. The chronic lyme people (e.g. ILADS) are often making recommendations that aren't based on solid evidence, but the reason they exist in the first place is because the CDC recommendations are also bullshit and the CDC isn't doing nearly enough to stem the epidemic.

Someone1234 7y ago

> when biopsied, seem to contain Lyme. What's this a reference to? And what do you mean by "seem" to contain Lyme Disease?

mysticlabs 7y ago

Biofilms and persister cells are the problem with chronic Lyme disease. https://rawlsmd.com/health-articles/understanding-biofilm https://rawlsmd.com/health-articles/understanding-biofilm https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6521364/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6521364/ It's pretty simple, if the disease is able to enter the form where it starts producing biofilms it can use them to evade antibiotics. A patient then must explore treatments to break up biofilms, and eradicate whatever infections or co-infections are present within them. There's medications that do this and more functional methods such as hyperbaric oxygen chambers. The people who have symptoms after antibiotic treatment and the people who relapse after antibiotic treatment still likely contain Lyme disease biofilms and persister cells which are capable of causing a full relapse given enough time and the right conditions. Those who receive early treatment and success with a single round of antibiotics are the lucky ones, and not the standard patient experience. Even people who have been bitten by a tick, immediately started antibiotics, and caught it immediately can still get chronic Lyme disease, especially if their initial round of antibiotics was for too short a duration. There is a lot of shit on the Internet, and what's happening to the people who have Lyme disease is an absolute travesty and crime against humanity due to our corrupt and failing medical system. The actually science and research on this is clear though: biofilms exist, Lyme disease can become chronic due to biofilms and persister cells which can evade antibiotics. Everyone talks about how theres super bugs and infections that evade antibiotics, well Lyme disease is literally a super bug that evades antibiotics and is probably one of the most successful super bugs of our lifetimes and yet people try to deny its capabilities despite countless medical research studies proving otherwise. It's baffling really.

cpascal 7y ago
To add: there’s also a cystic form of Borrelia burgdorferi. The bacteria is a spirochete, similar to the bacteria responsible for Syphilis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564911/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564911/ https://en.m.wikipedia.org/wiki/Borrelia_burgdorferi https://en.m.wikipedia.org/wiki/Borrelia_burgdorferi
100ideas 7y ago