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.
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.
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.
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
[1]https://www.jhsph.edu/news/news-releases/2019/three-antibiot...
What's this a reference to? And what do you mean by "seem" to contain Lyme Disease?
https://rawlsmd.com/health-articles/understanding-biofilm
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/
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.
The bacteria is a spirochete, similar to the bacteria responsible for Syphilis.
Neither discussed their suitability for phage therapy. The most recent investigated phages as a potential mechanism for horizontal gene transfer b/w Borrelia burgdorferi: https://www.ncbi.nlm.nih.gov/pubmed/27811049
More searching led me to a page titled "Chronic Lime Disease" at the "Phage Therapy Center": https://www.phagetherapycenter.com/pii/PatientServlet?comman...
They seem to have developed phages for clinical treatment of chronic infections (perhaps biofilm mediated) of typical pathogens, and suggest that patients suffering from chronic lyme disease may actually be testing false-positive for Borrelia, and if so, may actually be suffering from chronic biofilm-mediated infection of a more common pathogen. In their words:
>>>> quote <<<<
Sometimes patients who have a legitimate, or otherwise, diagnosis of Chronic Lyme Disease, fibromyalgia or chronic fatigue are actually suffering from a toxin overload that is produced by a particular strain of bacteria. By clearing the treatable bacterial infections and utilizing various techniques to help reduce the toxin loads, there can be much improvement in the patient's overall condition.
Patients who have or who have had Lyme and Lyme co-infections may have serious damage to their immune systems, making them more susceptible to infection. Chronic infections are biofilms, they are colonies of a number of bacteria that together form colonies in various parts of the body - the sinuses, urinary tract, prostate and elsewhere that are inherently more resistant to antibiotics. While in-vitro lab tests may show sensitivity to various antibacterials, such infections typically do not respond to antibiotics. Dr. Tim Lu (MIT), a professor at MIT, explains why biofilms are antibiotic resistant, and why bacteriophage therapy can be effective:
"A classic example of a patient who had a Western Blot test that detected antibodies for Borrelia bergdorferi: Laura Roberts nearly died from her "non-Lyme co-infection", due to a deadly strain of MRSA which was detected by the lab. There are other similar cases." - Dr. Tim Lu - Biofilms and Phage Therapy
To reiterate, if your infection is a biofilm containing Borrelia or any of the Lyme co-infections, phage therapy from our clinic is NOT going to help you. If the infection is caused by one of the treatable genuses (Staphylococcus spp., Streptococcus spp., Enterococcus spp., E. coli, Proteus spp., Pseudomonas aeruginosa, Salmonella spp., Shigella spp., Clostridium difficile (C.Diff), Klebsiella spp., Morganella spp. and several others) there is a good chance we can - but NO GUARANTEE. You will need to test for the presence of these treatable pathogens and even if they are cleared, sometimes symptoms will persist.
>>>>> endquote <<<<<
[1] https://www.ncbi.nlm.nih.gov/pubmed/?term=%22Borrelia%22%5BM...
[2] https://www.ncbi.nlm.nih.gov/pubmed?term=%22Borrelia%2Fvirol...
Turned out it was lung cancer. When it was diagnosed correctly, it had turn metastatic and spread to most of her organs including the brain. It went really fast from there. I don't know how it could have turned out. But I'm certain that she would have had more of a chance, if she hadn't interpreted her symptoms through the distorted information she got online.
I hesitate to post because it feels callous, but it doesn't sound like her physician did a good job either? Unless she was fighting his attempts to diagnose cancer with her own attempts to self-diagnose Lyme, it seems like neither did any good.
It goes without saying that a physician overlooking cancer for years isn't doing a great job - by definition. But they are not miracle workers, and it's tough to help someone working against you.
>Why some patients experience PTLDS is not known. Some experts believe that Borrelia burgdorferi can trigger an “auto-immune” response causing symptoms that last well after the infection itself is gone. Auto–immune responses are known to occur following other infections, including campylobacter (Guillain-Barré syndrome), chlamydia (Reiter’s syndrome), and strep throat (rheumatic heart disease). Other experts hypothesize that PTLDS results from a persistent but difficult to detect infection. Finally, some believe that the symptoms of PTLDS are due to other causes unrelated to the patient’s Borrelia burgdorferi infection.
"Other experts hypothesize that PTLDS results from a persistent but difficult to detect infection." https://www.cdc.gov/lyme/postlds/index.html
I see references to this online but they're all hearsay. I'd like to see a direct reference. The closest I can find is a quote from her in an article in The Atlantic (https://www.theatlantic.com/magazine/archive/2019/09/life-wi...) but it does not state an absolute belief in persistent Lyme.
The old page from last year https://web.archive.org/web/20180921231605/https://www.cdc.g...
However, some of this is the fault of the modern medical establishment who want to stop looking and treating at 6-12 months if you don't have something mainstream diagnosable. And "Lyme" was the medical establishment dumping ground for a lot of those people--the modern equivalent to "hysteria".
In addition, modern medicine is finding that there are physiological after effects to lots of diseases even once the primary disease is cured. This is unsurprising (look at the aftereffects of polio and rubella, for example), but doesn't really seem to get discussed much since medicine can't really do anything if a virus damages nerves, for example.
(As someone who had to have his gallbladder removed, this infuriated me. I couldn't get anyone to give me any treatment for gallstones other waiting to remove my gallbladder. And, once it was removed, any digestive complications afterward were just "sucks to be you". Um, sure, the alternative was death, but is it really a "treatment" if a significant chunk of people have negative lifestyle implications afterward? And why aren't we looking for a better actual treatment? Preferably one that doesn't involve ripping out body chunks?)
However, blowing off a significant subset of people who have real symptoms is part of the reason why alternative medicine continues to have such a following in spite of the fact that it doesn't actually work.
About a year after, I had to see a different physician for insurance purposes. He mentioned that he had, in twenty-eight years of practice, never seen anyone who had gone ahead and spent the time trying to dissolve the stones. I suspect, because removal is the "tonsillectomy of abdominal surgeries," they just all default to yanking it out.
Unfortunately, my gallbladder was at the "104 fever and hydromorphone for pain" level when I landed in the emergency room--choices weren't on the table at that point.
I had been watching my gallbladder for years and I absolutely couldn't pry ursodeoxycholic acid out of any of my doctors as my gallstones "weren't that big". No, they didn't LOOK that big on ultrasound--when my gallbladder was removed they were more than an inch across.
Part of the problem with the modern medical establishment is that anything with a component of more than twice a day or longer than 3 months has an abysmal compliance rate and so they won't give those treatments to anybody--even someone who can demonstrate that they can follow a disciplined schedule for years. And a gallstone treatment regimen takes 12 months before you can even start to see a change.
I think I lucked out in that everything calmed down as soon as the infection was knocked on a bit. That and my doctor was understanding, but I had located an overseas source of Ursodiol if he wouldn't come through.
I've been getting periodic ultrasounds and also some enzyme level checks.
I agree: even the establishment is looking for either a quick fix or a lifetime prescription, but almost nothing between the two extremes. Either, I think, require as little physical time as you can get away with, it's the middle course that is tedious for them.
Can you blame them for trying to help themselves? I don't think any of them claim to be conducting scientific studies.
If I ever have a condition that medical science can't explain or treat, I might find myself clutching similar quack remedies myself, despite all my vaunted rationality.
I don't blame them for trying to find a remedy, I do blame those that take advantage of that.
This is spot on. People probably have always been doing this - but now they also publish their theories to everyone on the Internet where all the outrageous claims live and prosper, because nobody writes a blog post that a given supplement did not work. This is https://www.gwern.net/Littlewood Law again.
For some time I have been thinking what is the rational thing to do when you are seriously sick in the internet era: https://medium.com/@zby/rational-patient-community-6d3617dff...
In one forum thread I stumbled upon in the self-diagnosed “chronic Lyme“ community, people were claiming that eye floaters are "morgellons", i.e. the person must have chronic Lyme which in turn led to Morgellons syndrome. It was both of the imaginary diseases of the new millennium combined into one superstition!
As a community, physicians and researchers are really not capable of dealing with such conditions right now. As a result, large numbers of suffering people end up neglected and you have, for example, patients with chronic fatigue syndrome using anti-retrovirals off-label on totally spurious grounds.
Honestly not sure what would make you think "Lyme" with the symptoms you describe.
wealthy people utterly bored with their life and bent on financial self destruction. maybe they are just deeply unhappy with their present and want to start anew.
they should check out john sarno's work on imaginary pain created by the subsconscious mind.
Quackery like this is commonplace. Usually there’s a thread of potential science buried somewhere in the treatments, like the idea of bee stings triggering a beneficial immune response. However, the common theme is always a complete lack of actual research and total hit or miss response rate among people who try these experiments on themselves.
One common theme in the chronic Lyme communities is that people who go into remission tend to attribute their response to whatever technique, supplement, or medication they were trying at the time. These people are desperate for relief, so they’re often cycling through 10s of supplements or quack treatments at a time. If they spontaneously go into remission, they’ll swear it was due to the supplements. Yet others fail to have the same success with the same supplements. You end up with long lists of “things that might help” according to anecdotal reports, and the desperate sufferers start trying them one by one until something changes. When they exhaust the basic supplements they move on to more exotic treatments like bee stings.
The sad part is that these people really are suffering, but they’ve become so militantly attached to the disproven chronic Lyme infection hypothesis that they’re stuck in a research wasteland. Self-diagnosed Chronic Lyme patients have gone so far as to harass researchers who publish results that disagree with their theories. It’s such a delicate topic that researchers and doctors don’t even want to touch the subject these days. It took me 2 weeks of calling infectious disease specialists and screening my positive test results before someone would let me step foot in their office. Apparently they’re buried under self-diagnosed “chronic Lyme” patients who order questionable self tests on the Internet.
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. This is what “chronic Lyme” refers to, assuming the patients had legitimate infections in the first place. Many of these patients are self-diagnosing based on vague symptoms alone, or ordering quack tests from Lyme labs that will give anyone a positive result as long as they’re willing to pay for it.