I spent some time in the Lyme disease communities after I tested positive for Lyme disease under the official two-test CDC criteria. The pop-culture version of Lyme disease discussed on the Internet has almost no resemblance to the actual medical science. There are a lot of people genuinely suffering unexplained symptoms, real pain, who are drawn into the seductive explanations of the “chronic Lyme” communities online.
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.
> 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.
> 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.
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
[1]https://www.jhsph.edu/news/news-releases/2019/three-antibiot...
[2]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6388746/
[3] https://www.ncbi.nlm.nih.gov/pubmed/31151194
> 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.
Did you continue to rest positive for IgM? Did you eventually identify an actual cause?
> when biopsied, seem to contain Lyme.
What's this a reference to? And what do you mean by "seem" to contain Lyme Disease?
Biofilms and persister cells are the problem with chronic 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.
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://en.m.wikipedia.org/wiki/Borrelia_burgdorferi
Are there phage therapy options for persistant lyme disease? Lyme disease is caused by the pathogen Borrelia burgdorferi. A quick pubmed search ([1],[2]) turned up two papers describing phage that interact with Borrelia.
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...
My aunt was sure she had chronic lyme. She used a couple of years of her life fighting her physician over it. Trying to get him to accept it.
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.
> 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.
Your post feels callous to me too. The point of my post was that chronic lyme fearmongering made their relationship dysfunctional. Delaying proper diagnosis and treatment.
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.
During a panel at this years LymeMIND conference a representative from the CDC named Susanna Visser said that she and her team absolutely believe in persistent Lyme, and that the CDC website now acknowledges it on a basic level.
>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
> ...a representative from the CDC named Susanna Visser said that she and her team absolutely believe in persistent Lyme...
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 CDC has denied the existence of persistent Lyme for years. They fact that they are now mentioning it as one possible theory is significant in itself.
The old page from last year https://web.archive.org/web/20180921231605/https://www.cdc.g...
Nice post. One thing I’ll offer in defense of the “chronic Lyme” community is that if you have persistent medical issues that don’t have a quick solution (or else a well-established, very expensive drug), doctors in general will just not want to deal with you, which can be very frustrating. When people don’t get the help they need, they turn to one another, for better or worse.
Your post shows the tension between science/medicine and the people who suffer from chronic problems. I know someone who had/thought she had Lyme’s. She ran from doctor to doctor, got dozens of different drugs and was often treated with disbelief. This while a person who had been pretty active before had repeated periods when she barely could leave her home or do anything else. It’s no wonder that these people try everything possible if regular doctors can’t help. What else are they supposed to do? When I taught yoga I met people with fibromyalgia or chronic fatigue. They all had stories of doctors questioning the validity of their symptoms. It seems if a problem isn’t documented in textbooks they have a tendency to deny its existence.
> There are a lot of people genuinely suffering unexplained symptoms, real pain, who are drawn into the seductive explanations of the “chronic Lyme” communities online.
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.
I have a friend who had his out and is in that roughly one-in-ten group of people who have to stick pretty close to a restroom, even years later. Due to that, when I landed in the hospital due to an infected and unhappy gallbladder, I decided against removal for myself and spent some time digging up actual studies on how to dissolve the gallstones. After all, I could always have it cut out later. Brought a treatment regimen and highlights of the primary sources to my physician, who gave me the green light for a course of treatment.
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.
> Due to that, when I landed in the hospital due to an infected and unhappy gallbladder, I decided against removal for myself and spent some time digging up actual studies on how to dissolve the gallstones.
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.
That's about where I was when I got there. I ended up with six dosages of hydromorphone and had a similar temperature, plus a blood pressure that had soared past 200-something. It was not a fun time.
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.
> 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.
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.
>Can you blame them for trying to help themselves?
I don't blame them for trying to find a remedy, I do blame those that take advantage of that.
"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."
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...
“chronic Lyme” is probably something, just probably not literally 'chronic Lyme'. The problem is, if you think you know the cause you'll stop looking for the actual cause.
Sometimes what a person calls “chronic Lyme” isn’t actually anything, at least not anything pathological. I have very noticeable eye floaters (which any doctor will tell you are completely benign debris in the eye’s vitreous) and I have occasionally done a web search to learn more about how they arise, what they really look like, etc. But web searches for eye floaters these days tend to bring up a lot of people claiming that eye floaters are Lyme bacteria, or whatever, and having them is a sign of “chronic Lyme”.
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!
You'll also see people touting gluten-free diets to help the symptoms of "Chronic Lyme Disease" and the theory that "Chronic Lyme Disease" causes "Non-Celiac Gluten Sensitivity" (google it for mind-numbing websites).
This is a great comment. A lot of what OP says is pertinent to other poorly-defined chronic diseases too.
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.
Somewhat diverging from the topic, but I wonder how many “chronic Lyme” cases people self-diagnose are instances of parvovirus B19. I'm in the process of recovering from a B19 infection now, but had my kids not gotten it first and displayed the classic slapped-face rash of parvo, I would have almost certainly gone down the Lyme rabbit hole based on the signs and symptoms I've been experiencing. The spontaneous appearance of rheumatoid arthritis that lingers for weeks immediately brings to mind the colloquial notion of Lyme disease.
I had a look at the Wikipedia page for parvovirus B19, but I don't see many similarities to what chronic Lyme sufferers say; they generally complain of chronic pain that lasts for several months or years, not just weeks. Lyme sufferers also generally claim to have been bitten by a tick, and had them characteristic target rash, rather than a "slapped face" rash.
Honestly not sure what would make you think "Lyme" with the symptoms you describe.
I believe the idea is that once the rheumatoid arthritis pops up suddenly and lasts for weeks, it's easy to jump to a conclusion it could be the beginning of the chronic pain from Lyme disease, and that you just didn't find the tick, etc.
chronic lyme disease sounds like affluenza.
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.