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Chronic Lyme disease: Fake diagnosis or pseudo-diagnosis, NOT fake disease

For once, Twitter actually changed Orac’s mind. Chronic Lyme disease is not a fake disease. Rather, it is a fake diagnosis or pseudodiagnosis disconnected from what is really going on physiologically. That’s why only quacks use the diagnosis.

Today, I’d like to do something a bit different than what I usually do, and that’s to take a step back and discuss how an experience in the weeds on Twitter a couple of weeks ago that that led me to start to think about a term that we frequently use or, more specifically, rethink that term. The term to which I refer is “fake disease,” and my rethinking started innocently enough, with me doing what I do sometimes on Twitter: responding to the promotion of quackery by—who else?—Dr. Mehmet Oz, who was promoting chronic Lyme disease quackery:

Yes, big surprise, last week Dr. Oz was promoting the quackery that are treatments for chronic Lyme disease, and my response was to call chronic Lyme disease a “fake disease.” I’ll elaborate a bit more in a moment, but for the moment it suffices to point out that we refer to chronic Lyme disease as a “fake disease” because there is no evidence that the symptoms patients diagnosed with chronic Lyme disease suffer are, in fact, due to the tick-borne spirochete that causes acute Lyme disease. What chronic Lyme disease advocates and “Lyme literate” doctors claim is that the symptoms these patients experience are due to chronic persistent infection with B. burgdorferi or other Borrelia species of bacteria that can cause Lyme disease, and that long term antibiotics (as in months or even years of antibiotics) is the treatment. As we’ve pointed out time and time again, though, there is no evidence that chronic Lyme disease/infection exists, and several randomized clinical trials that show very clearly that long term antibiotics do not help and can cause harm. It is, of course, not surprising that prolonged courses of antibiotics can cause harm. They decimate the normal flora of the colon and other niches where bacteria live on the body while selecting for resistant bacteria.

That’s why the CDC, the NIH, the Infectious Diseases Society of America (IDSA), the American Academy of Pediatrics, the American College of Physicians, and the American Academy of Neurology all reject the notion that “chronic Lyme disease” is a scientifically and medically valid diagnosis and that long-term antibiotics are an appropriate treatment. Over a dozen international organizations, like the Canadian Public Health Network, and the European Federation of Neurological Societies, concur.

With that knowledge in the back of my head, I didn’t really think that my Tweet would garner much, if any, reaction, as it just didn’t seem too controversial to me. Then Dr. Jen Gunter retweeted it, which exposed it to a much larger audience than I’m accustomed to. Twitter, being Twitter, this predictably led to a lot of angry people Tweeting at me or subtweeting my original Tweet. Here are some examples:

This is what I like to refer to the fallacy of future vindication.

I do so love the “pharma shill gambit,” but let’s continue:

Yes, I do have bad reviews on those doctor review sites, but I haven’t been able to find one of them that, as far as I can tell, was actually one of my patients. Why do I say that? Simple. There are various “tells” and dead giveaways, such as mentioning that I mentioned my blog to them. Basically, I never discuss my blog with patients unless the patient brings it up first, and when that happens I only do it reluctantly. I also can’t help but note that posting bad reviews on doctor review sites is a tactic of the antivaccine movement to harass and intimidate doctors who speak out against their pseudoscience.

In any event, you get the idea. A lot of chronic Lyme disease patients were very unhappy at my characterization of chronic Lyme disease as a “fake disease”. Many of them viewed the term “fake disease” as a direct attack on them, an insinuation that they were hypochondriacs or that their symptoms weren’t real. In the intense world of Twitter, where it’s frequently “Tweet first and ask questions later” and the pithy, biting comment is valued more than it should be, it’s easy to fall into the trap of going for memorable sarcasm, and I appear to have done that. After all, far be it for me (or, I daresay, any of the bloggers here at SBM) to deny that patients with chronic Lyme disease experience symptoms ranging from mild to severely debilitating. The message that we as advocates of science-based medicine trying to promote is that, whatever is causing those symptoms, it’s not what “Lyme literate” doctors claim it is. It’s not persistent infection with B. burgdorferi or other Lyme-associated spirochetes after the initial Lyme infection is treated with antibiotics, and treating people with long term antibiotics for months or even years does not help them and can definitely hurt them.

That’s why I’ve reconsidered and will no longer use the term “fake disease” to describe quack diagnoses like chronic Lyme disease. Instead, henceforth I will use the term “fake diagnosis” or “quack diagnosis” to describe these terms. Now, I can hear the more “militant” and “reason-based” of you out there making like Picard in a facepalm meme and asking, “What the heck is the difference?” Certainly, that’s your prerogative, and—who knows?—you might even be right. But hear me out before dismissing me as going all wobbly.

What is “chronic Lyme disease”?

It’s probably worthwhile here to discuss Lyme disease and its treatment. Lyme disease, as you probably know, is the most common tick-borne infection in the Northern Hemisphere. In the US, it is caused by B. burgdorferi, while in Europe multiple spirochetes (e.g., B. afzelii, B. garinii, B. burgdorferi) can cause it. Lyme disease is a complex infection and has a number of objective signs after one is bitten by a tick harboring Lyme-causing spirochetes, the most common of which is erythema migrans, which is seen early in the infection in about 80% of Lyme disease cases and sometimes called a “bull’s eye rash” because that’s what it often looks like. Even if it doesn’t look like that, it’s still a characteristic expanding rash. Other early symptoms can include fever, fatigue, and headache, while more advanced symptoms can include neurologic symptoms, joint pain and stiffness, severe headaches with neck stiffness, and cardiac symptoms such as palpitations. All of these symptoms usually respond well to conventional antibiotic therapy. However, as noted in a New England Journal of Medicine (NEJM) Current Concepts article:

Despite resolution of the objective manifestations of infection after antibiotic treatment, a minority of patients have fatigue, musculoskeletal pain, difficulties with concentration or short-term memory, or all of these symptoms. In this article, we refer to these usually mild and self-limiting subjective symptoms as “post–Lyme disease symptoms,” and if they last longer than 6 months, we call them “post–Lyme disease syndrome.”

It’s true. There is a subset of patients who’ve been treated for properly diagnosed Lyme disease who still have symptoms that persist months or years after treatment, perhaps 10-20% who will develop chronic symptoms of fatigue, muscle aches, poor sleep, and cognitive fog, hence the term post-Lyme disease syndrome. What cause of these symptoms remains poorly understood. Perhaps they’re sequelae of inflammation or an activation of the immune system, or perhaps they’re due to another cause that was triggered by the acute infection. We don’t know yet. What we do know is that there is no convincing evidence that these symptoms are due to persistent B. burgdorferi infection or that long term antibiotics are required to eradicate the disease. Sure, “Lyme literate” doctors point to anecdotes of sometimes-dramatic improvement after long term antibiotics, but anecdotes are one of the lowest forms of medical/scientific evidence, and multiple well-designed clinical trials have failed to demonstrate that longer courses of antibiotics relieve these patients’ symptoms.

The article also echoes the CDC and NIH in pointing out that many patients diagnosed with “chronic Lyme disease” have no evidence of having or ever having had Lyme disease in the first place:

The diagnosis of chronic Lyme disease and its treatment differ substantively from the diagnosis and treatment of recognized infectious diseases. The diagnosis is often based solely on clinical judgment rather than on well-defined clinical criteria and validated laboratory studies, and it is often made regardless of whether patients have been in areas where Lyme disease is endemic.6,7 Although proponents of the chronic Lyme disease diagnosis believe that patients are persistently infected with B. burgdorferi, they do not require objective clinical or laboratory evidence of infection as a diagnostic criterion.

Thus, for “Lyme-literate” MDs, naturopaths, chiropractors, and all manner of other dubious practitioners, “chronic Lyme disease” is a wastebasket diagnosis that “Lyme literate” doctors use for patients with unexplained chronic symptoms. The symptoms are real, hence my objection to the term “fake disease”, but the diagnosis is not based on science or any conventionally accepted reproducible diagnostic criteria. Yes, the NIH notes that there are studies showing that “B. burgdorferi may persist in animals after antibiotic therapy”, including in mice and nonhuman primates, but in the nonhuman primates the NIH noted that it was “not possible to culture these bacteria and it is not clear whether they are infectious.” Not surprisingly, “Lyme-literate” doctors point to these studies as evidence that chronic Lyme disease is a real entity caused by persistent infection with B. burgdorferi. Unfortunately, randomized clinical trials are where the rubber hits the road, and if chronic antibiotic therapy doesn’t improve the symptoms of patients diagnosed with post–Lyme disease symptoms or syndrome, it’s unlikely that the persistence of the Lyme spirochete is the cause of those symptoms, even if someday scientists demonstrate the persistence of B. burgdorferi in humans after standard treatment for Lyme disease.

Fake diagnoses: Beyond chronic Lyme disease

In light of my discussion above, I note that, yes, I’m aware that symptoms do not a disease make. How often do you or I have a headache that goes away, aches and pains, or unexplained fatigue that resolves, none of which are associated with a definable disease? It’s called living and getting older. We all experience these things from time to time, some of us more than others. I’m also aware that, although it might seem deceptively straightforward at first glance, defining just what a “disease” is can be devilishly tricky. I’m not going to go into the weeds of that discussion right here, other than to note that defining a disease is often the necessary first step to determining how to treat it. That’s why it’s so important to note that these patients with chronic symptoms have been labeled as having a disease. Whether the definition of that disease is supportable by science or not doesn’t matter in terms of the explanatory power that it has for the patient. The label assures them that someone is taking their symptoms seriously, as does the treatment associated with the label. That’s why so many of them react so strongly to an attack on their fake diagnosis as a fake disease.

I like the term fake diagnosis more than fake disease, because it’s such a generalizable term in pseudomedicine. I bet that, if you just took a minute to think about it, you could name quite a few other fake diagnoses. If you think about it more, you’ll realize that these fake diagnoses are applied to patients with real symptoms that are as yet unexplained. In my experience having studied these things for nearly two decades, I’ve concluded that, in addition to chronic Lyme disease, the most common fake diagnoses used by quacks include adrenal fatigue; chronic candidiasis; heavy metal toxicity (I still can’t believe that no one’s named a rock band after this); electromagnetic hypersensitivity (sometimes called EMF or Wi-Fi allergy); or deficiency of a nutrient or nutrients, my favorite example being orthomolecular medicine, a whole pseudomedical specialty constructed around testing as many nutrient levels as possible and then massively supplementing any “deficiencies,” whether the deficiency is real or not, whether it needs supplementing or not.

Like chronic Lyme disease, these diagnoses are vaguely and poorly defined, such that basically any patient with any set of puzzling and persistent symptoms can be shoehorned into one of these diagnoses. All of these conditions allow quacks to provide the illusion of “treating the cause, not the symptoms” and to exercise “individualization” of treatment so extreme that they can basically do whatever they want or, as I like to say, make it up as they go along. That same fetish towards “individualization” makes patients feel special and cared for more than a cold, standardized diagnosis and science-based, sometimes algorithmic, treatment or, even worse, lack of a definable diagnosis to explain their symptoms.

What’s the harm of fake diagnoses? Plenty!

What’s the harm of these fake diagnoses? you might ask. Plenty! First and foremost, the problem with placing a fake diagnosis on a set of symptoms that a patient is experiencing is that it can forestall proper medical investigation that might find the real cause of the patient’s symptoms. Indeed, Just such a patient stepped forward into the fray:

Her essay, Lyme Warrior No More, is well worth reading. Here’s a relevant excerpt:

For nearly 11 years, I told people I had chronic Lyme disease. It wasn’t true. Then I told people I had Post Treatment Lyme Disease Syndrome, but that can’t be true anymore, either. The one thing I know for sure is that I was a victim of “chronic Lyme” treatment. This consisted of false diagnoses, long-term antibiotics, and other inappropriate drugs and supplements, all based on dangerous pseudoscience.

People who identify as having chronic Lyme usually become entrenched in a cult-like support group community both online and in real life. These Lyme groups are echo-chambers for pseudoscience. They convince followers that they must see self-appointed and often secret “Lyme-literate doctors” (LLMDs) who will treat them for chronic infection. These groups empower their marginalized members with validation, support, and the ability to even treat themselves by comparing notes when there is no access to a LLMD. Their multiple conspiracy theories mirror those of the anti-vaccine community in many ways, and both movements overlap. As it is with cults, it doesn’t matter who you are or how educated you are, anyone can get sucked in. However, this community is disproportionately female. I suspect one reason is that more women report not being taken seriously by doctors, and perhaps many women have little choice but to look to the fringes for help out of desperation. Once you’re marginalized, vulnerable, desperately ill, entrenched in online pseudoscience and conspiracy theory echo chambers, and wooed by the nicest quacks you’ll ever meet, you’re a Lyme Warrior. If you or someone you love is a Lyme Warrior, then please learn from my mistakes.

Her doubts finally started to lead to her leaving the world of chronic Lyme disease quackery when she was told that her son had “congenital Lyme” based on his chronic pain and testing positive for Lyme by a “Lyme literate doctor’s” standards even though he tested negative by CDC standards:

After a few rough nights, I told my husband I was thinking about treating our son for Lyme, but I wasn’t sure if that was the right thing to do– I just couldn’t watch him suffer anymore. My husband had more doubts than me. He wondered if my son was mimicking my own illness he’d been witness to instead of it really being real. I wondered this, too. We decided to wait and talk to Dr. Anderson more. Dr. Anderson did a fantastic job of convincing me with perfect patience and compassion that congenital Lyme is pseudoscience. He also went out of his way to research for over a year until he finally figured out that my son had joints that grossly hyperextended (future contortionist?), which could cause this amount of pain and nightly pattern of pain while growing. Physical therapy was the answer. His pain stopped. Aszani Stoddard, on the other hand, was trying to convince me to treat him and referred me to a Lyme-literate nurse practictioner who treats children at Newbridge Clinic. I declined. She even appealed to my duty to protect my son from medical neglect. This was when I found myself Googling “is chronic Lyme disease real?” in earnest.

The result was that she found Lymescience.org, which led her to question her “Lyme literate doctors” even more and:

I reached out to friends, family, and even veterinarian coworkers with extensive knowledge about Lyme in dogs. I was shocked to learn that some people close to me knew this was quackery and didn’t speak up before I did, even feigning support. This was more upsetting to me than if they had argued with me about my illness really being Lyme, which feels like gaslighting for sick people. I watched my son get back to normal with no Lyme treatment. I felt myself getting better off antibiotics. I spoke with others online who are victims of chronic Lyme treatment. I left my integrative medicine doctor and found a traditional MD. I was no longer a Lyme Warrior.

My new doctor has never heard of the cult of chronic Lyme and stared at me in shock when I told her my story. She thinks my mysterious illness is partly damage done, and she is properly appalled that people think chronic Lyme is a real thing. I trust her to tell me the truth, even if it’s not what I want to hear, and I trust she’ll do it compassionately. When you’ve lost everything to illness, you build up a network of support in which to survive it. People who leave the chronic Lyme cult are often still ill, but now they’re without support to boot. They are even attacked by other Lyme Warriors for speaking out. Honestly, if my speaking out means I might indirectly save even one child from harm, then it is worth it. Being able to eat gluten again isn’t so bad, either.

Indeed. I realize that it must be horrible for these patients who have unexplained symptoms. There’s no doubt that we in medicine need to do better by these patients. However subjecting them to quackery is not the answer.

There are other stories of just this sort of phenomenon. Worse, the cult of chronic Lyme and “Lyme literate” doctors has political power. They’ve not only persuaded state legislators in some states to introduce bills mandating insurance coverage for long term antibiotics for chronic Lyme disease (and in some cases, like Massachusetts, passing them into law, legislators there overrode a veto by the governor so that insurers would have to pay for long-term antibiotic treatment) and protecting “Lyme literate” doctors from sanctions.

Fake diagnosis, not fake disease

This brings us back to the concept of referring to entities like chronic Lyme disease or adrenal fatigue as fake diagnoses or quack diagnoses rather than as fake diseases. I realize that some might view this as a minor matter, a quibble, but as a physician I do not. We at SBM started and continue this blog in order to protect patients from unscientific, ineffective, and potentially harmful medicine. Given that, I, at least, do not want to do anything that patients, even erroneously, interpret as attacks on them. It’s become clear to me that they do interpret the term “fake disease” that way. The term “fake diagnosis” or “quack diagnosis” however, directs the charge of fakery right where it belongs, at the quacks making the bogus diagnosis. The symptoms these patients experience are real. The diagnoses used by quacks to describe these symptoms are not. That is why I now refer to chronic Lyme disease and all the other similar “diseases” diagnosed by quacks as “fake diagnoses” or, if I want to be even more polite, “pseudodiagnoses.”

I’m under no illusion that a simple change in terminology will lead patients with fake diagnoses to be less hostile to science-based medicine. Nor am I under any illusion that medicine does anywhere near as good a job as it should deal with chronic symptoms that don’t fit easily into a specific disease. On the other hand, language matters, and there is utility in trying to be as clear as possible. Using the term “fake diagnosis,””quack diagnosis,” or “pseudodiagnosis” does help to remind me (and, I hope, others) to take the patient’s complaints and symptoms seriously even if I can’t explain them now and to put the blame for quackery where it belongs, on the quacks, by reminding myself (and, I hope, others) that it’s the quacks who make the fake diagnoses, not the patients and that the answer to helping poorly-understood symptoms is not pseudoscience.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

128 replies on “Chronic Lyme disease: Fake diagnosis or pseudo-diagnosis, NOT fake disease”

Similarly, I’ve never felt that “Morgellons disease” patients aren’t suffering with real symptoms, but that the diagnosis itself reflects a nonexistent entity.

It’d be nice if ceasing to refer to chronic Lyme as a “fake disease” and instead calling it a “fake diagnosis” soothed those being treated for it. I’m reminded though of Dr. Peter Hotez’s reluctance to use the term “antivaxer” and instead referring to such people as “antivaccine”.

Whatever difference these alterations in terminology make in terms of communication is likely to be infinitesimal.

I have it on good authority — a woman I met one day in the gym — that chronic Lyme disease is a real thing and hers was cured with the right diet, one that her chiropractor gave her. Oh, and MDs are ignorant.

Anecdotes are not evidence. Some docs are indeed ignorant, but the collective opinions of large organizations are based on the evidence, not on random conversations with individuals.

“A woman you met in the gym” can be a good authority, but the best is the FOAF – Friend of a Friend.

Excellent! And almost as good a source as YouTube (where I learned how to fight Chemtrails with Windex).

I think Orac is on to something here. We really don’t want to be seen as attacking the patient. It’s the quacks who deserve our contempt.

Orac said, “Now, I can hear the more “militant” and “reason-based” of you out there making like Picard in a facepalm meme and asking, “What the heck is the difference?” Certainly, that’s your prerogative, and—who knows?—you might even be right. But hear me out before dismissing me as going all wobbly.” When I read that, I got to thinking about a discussion I had awhile back with a psychologist friend about the definition of somatic disorder. We weren’t talking about quackery; we were talking about something else but I didn’t quit get the differences between somatoform disorder and facticious disorder/malingering.

Somatoform disorders are psychologically based symptoms that are not explained by the underlying medical condition of the patient, or are inconsistent with the patient’s general state of health. These symptoms are not made up; they are real to the patient but there is no root in a physical cause. They shouldn’t be dismissed as “all in their head” despite being based in a psychological process because the symptoms and suffering are real, they are not voluntary, and the patient can’t just quit feeling the way they do or turn the symptoms off. It takes skill to uncover the root cause of the symptoms, and deal with them.

People complaining of chronic Lyme could fit the definition of a somatoform disorder in some cases (misdiagnosis could be another if their first step is to visit a quack). They’re not making this stuff up, medical science seems to have failed them, and they become prime candidates for quacks to be taken advantage of, to their detriment.

Fake diagnosis puts on the onus on the quack not the patient. If the goal is to convince patients to ditch quacks and trust real medical providers, appearing the blame the patient (even if unintentional) is counter productive.

Unfortunately, my friend’s mother was a victim of a quack Lyme doctor:
she had symptoms that probably included what Panacea is describing. She was a prime target for quacks- an older, less educated woman- a seamstress who had married a successful real estate developer – now widowed, she owned apartments, an office building, vacation homes etc . The doctor ( I won’t name him but I did find material on the internet about his practice- in several states- years ago) had her stay at his facility for a month for intensive, IV anti-biotic treatments twice and later followed up with at-home treatments. To make a long story ( years worth) short, she relapsed again and again and eventually the doctor “dismissed” her as a patient.. Her son, a lawyer, tried to sue the doctor to no avail. She had additional CV issues and died after a long period of disability.

I wonder if “Lyme literate” doctors cluster around well-to-do suburbs and places like Boca Raton?

Interestingly, Lyme quacks actually use meds- although they use them wrong. No stress on natural healing here.

Quick note:
after a search, I find that that doctor is still in business, has a book, a radio show etc. but may be more under the radar – i.e. his material doesn’t scream chronic Lyme

´I’m under no illusion that a simple change in terminology will lead patients with fake diagnoses to be less hostile to science-based medicine.’

Don’t be so sure about that… If you do not make that important distinction, you’re locking patients with no way out from pseudoscience. Making a distinction between pseudodisease and pseudodiagnosis is crucial to enabling people on both sides to start talking to each other.

But that point (distinction between pseudodisease and pseudodiagnosis) has also been made for ages by antipsych folks. So whether you recognise it or not, yes, you’re starting to have strange bedfellows…

But that point (distinction between pseudodisease and pseudodiagnosis) has also been made for ages by antipsych folks.

It didn’t work out so well for R.D. Laing. Have you seen Asylum? I haven’t bothered much with Szasz, but he’s inapropos here anyway.

« Well, who are the strange bedfellows, then?»

The random commenter at Mad in America that already has figured out by himself that people do suffer mentally (i.e. real diseases) and that nevertheless psychiatric diagnoses suffer from a shitload of problems (too long to go into that, but let’s mention the Problem of Comorbidity, as well as the rather rife practice that allows third parties to assign symptoms to a patient without his knowledge and in spite of evidence…) that makes you wonder if they shouldn’t drop the DSM and start validating an alternative.

The point is not even that I claim or do not claim that psych diagnosis are pseudodiagnosis or not. The point is that a lot, a lot, a lot of the antipsychotic folks have been for ages claiming that mental suffering is real, and that psych diagnoses do more than a bad job at capturing that. That’s why quite a lot of them are rather sick and tired of being conflated with ´mental illness deniers’ when they claim what anyone knows, but with a vengeance…

Orac has been differentiating real disease from pseudodiagnosis from quacks.
Antipsych folks have been differentiating real mental suffering from question of validity and teleology of the DSM classification (for instance).

The analogy is indeed there. And in the domain of logic, there is No Free Lunch: once you start considering that there is validity in the internal logic of 1., you start opening the discussion to the idea that there may be validity in the internal logic of 2.

Not saying that 2. is true. Just saying that it should logically be (I know it won’t be) more difficult to infer that someone is a monster willing to put suffering people on the streets, in the cold, with no social support and leave them feeling homicidal without doing nothing for them (mental illness denialism) from the mere fact that what he’s witnessed gives him a serious impression that psych diagnosis do not carve reality at its joints at all.

The strange bedfellows are the random commenters at Mad in America (not the hardcore ones) that hold this position.

I know it’s always easier to bring up Laing, Szasz among many others (Scientologists anyone?) to infer guilt by association. Things won’t change that easily… Been there, done that, and almost murdered a social worker that had the nerve to describe me as ´antipsychiatry’ in this way. I do not take this issue lightly at all.

« Antipsych folks ». Not « antipsychotic folks », sorry. I hate that smartphone and its autocompletion…

The strange bedfellows are the random commenters at Mad in America (not the hardcore ones) that hold this position.

Thank you for clarifying.

There are a lot of decent essays and personal experiences on that site; there’s also some pseudoscientific crap.

A lot of the people commenting there have real and valid things to say, though. It pains me that a lot of very valid criticisms of psychiatry, especially from patients who’ve gone through a lot of humiliation and mistreatment and frankly abuse, get filtered through or misused for a sh!ttier and less nuanced anti-psychiatry position.

The seriously mentally ill are often not even treated as human in this society, perversely especially so in the places that are meant to “help” them/us. Literally like subhumans. It’s incredibly messed up.

To clarify:

whenever I mention anti-psychiatry I am speaking about those ( woo-meisters) who deny that there is mental illness AT ALL or that it can be treated with diet alone, not meds. Unfortunately, even standard psych is not doing a great job with SMI.
I have NEVER worked within the “system” ( i.e. hospitals, etc) having only advised family members of the SMI. I chose a different path with potential college students, international students, at-risk youth and hiv+ people.

What people suffer is REAL. Labelling it and treating it are complex problems that most societies fail to address adequately.There are indeed abysmal conditions in hospitals AND many people instead wind up in jails or on the street.
I often ask myself why isn’t there money for them in wealthy countries like those in North America, AUS or Europe? Are they too small a group to get the attention of political parties? I don’t know.

About mental illness itself-
I don’t think that it’s purely physical/ ” a disease”- social interactions, abuse and education all affect outcomes. Treatments may involve meds – which can help some– not all people- but other services ( education, housing, counselling, job assistance, concerned families/ friends) are needed as well.

In grad school, a prof had us read about how diverse cultures treated people with mental symptoms ( Hutterites, Central American Native people, etc) by not separating them from the general milieu or labelling them as different
Food for thought..

That said, Scientology and woo-merchants find “clients” because of poor outcomes as well as denialism.
This topic could go on for weeks’

BUT Jack and F68.10, I’m sorry that you had awful experiences. Your voices are important.

If more people thought like you, there would perhaps be a way to improve the situation. Unfortunately, there is intense internal pressure within psychiatry not to deviate from the orthodoxy. There are many many reasons explaining this intense pressure. But it’s entirely unsurprising that mental patients reject their diagnosis. I just wish that the psych milieu focused, instead of acceptance of diagnosis, on acknowledgement of suffering by the mental patient. And when the patient denies suffering, we should stop blackmailing them into accepting the sick role. Sometimes people suffer and don’t need help. Sometimes people need help and don’t suffer. The diagnostic system enforced a one size fits all mentality that ends up resulting in severe abuse. If we could acknowledge that instead of doubling down endlessly and calling each other flat earthers and nazis (or even worse in my opinion: ´humanist’, the ultimate swear word), we’d be making a giant leap. And yes, it’s a very very long discussion that we need to have, and it hasn’t begun yet.

There are indeed abysmal conditions in hospitals AND many people instead wind up in jails or on the street.

I have a very close friend, a former “frequent flyer” until an effective med regime was coughed up, who was able to rate the local facilities. I know which I’m choosing if the time comes.

It’s incredibly messed up.

Or variable? The joint near grad school seemed rather luxurious compared with the many at which I’ve had to present myself as a visitor.

@ Jack :

Relating to your other comment about hormones:
when you do this, really try to keep frequent notes about what you experience, both physically and emotionally.
Because of past issues you’ve suffered
( IF I may be so bold as to mention them)
the new treatment may interfere with other meds/ treatments. Dosage may be the answer. I’m sure that you’ve already read about this. I’m not sure if you’re still on meds from the previous problems. Be careful.

But please keep your eyes open/ PRICK up an ear**

Personally, I’d be more worried about skin problems and gaining weight. But hey, you might like being bigger.

** I HAD to say that.

@Narad:

Oh yeah, some places are definitely better than others. The U of M psych ward is the nicest one I’ve been in, and I heard other people say so as well.

But a lot of places are a lot worse – the place in Yakima was terrible – and when you’re involuntary, you don’t get a choice of where to go; they stick you where there’s a bed open.

@Denice:

I saw an MD – specifically an OB/GYN – to get on hormones, so I’m imagining that she would have brought up any contraindications. I am still on a couple meds – a middling dose of citalopram (bog standard anti-depressant) and also Lamictal. I’m actually thinking I might taper down on them at some point in the future, actually, but I don’t want to mess with anything right now.

I’ve actually been losing weight lately – I’m down about 20 pounds, and I want to lose more. So I guess I’ll just have to be mindful. Although a lot of guys say that they immediately became ravenous, which I haven’t noticed, so, knock on wood. I do plan to lift some weights and stuff, though. Push-ups. Yadda yadda.

@Narad: ´And sometimes people suffer and do need help.‘

I’m trying not to reply too much on this thread and other articles as I want to lower down the average of my comments to article ratio down to 2. So let’s please leave the discussion as it stands now. Moreover, we’re now severely deviating from the topic of chronic Lyme disease, so let’s not irritate our host too much, whom I praise for his leniency in moderating the comment section.

Your remark is nonetheless « interesting », and I therefore have a little homework exercise for you: what you’ve been doing is accusing me of a specific cognitive bias that is indexed by rationalwiki. You might very well profit from identifying which one it is, and subsequently wonder whether or not you’ve yourself fallen for that same cognitive bias when writing your comment.

I think it’s best that you do this homework in your head and not communicate back on it. Indeed, further commenting will only result in endless bickering. So let’s drop the public debate and let me invite you instead to some introspection.

It always amazes me that people will stick candles in their ears to remove earwax. I wonder if ass candles will remove “blockages” as well?

I have plenty of criticism for both sides of this issue. I fell seriously ill after being bitten by a tick at some point on a road trip across the US in the Summer of 2017, which would have been attached for 2-3 days before I found it.

The first two doctors I saw were incredibly dismissive because my symptoms (mostly severe nerve pain) did not perfectly match the most common manifestations of borreliosis in the United States, and tests didn’t turn up anything. If I’d had a swollen knee and facial palsy, they’d have taken me plenty seriously regardless of the test results (they said so themselves), but as it was would only offer me a minimal course of antibiotics – less than what I understand to be generally recommended based on the symptoms I had and the amount of time that had passed since being bitten. The third doctor I saw was a “Lyme Literate” doctor and a naturopath who prescribed an even longer course of the same antibiotic, along with some expensive “supportive” herbal treatments (which I was skeptical of, but willing to try after being sick for nearly a year at that point).

Each course of antibiotics made me feel MUCH better, but in every case I relapsed within a few weeks or months.

Needless to say, I’ve done an awful lot of reading on the subject, and one thing I’ve noticed across the board is that MOST PEOPLE, in dealing with this topic, seem to be dogmatically attached to the idea that we have ONE kind of Lyme disease in the United States, and a different kind in Europe.

FINALLY, after being sick for a year and a half, I came across a recent article describing a cluster of CONFIRMED Lyme disease cases that cropped up during the exact timeframe of my travels, and in the same geographical area where I would have been bitten – and which presented with the SAME EXACT symptoms I had. These were all categorized as cases of EUROPEAN neuroborreliosis presenting with “Bannwarth Syndrome” (FINALLY, a name for the ungodly recurring pain radiating from my spine for days or weeks at a time).

I noticed that in each of these cases, the patients were treated with ceftriaxone rather than doxycycline (which I had taken). I found additional information suggesting that a higher dose of doxycycline may be necessary to effectively eliminate infections of the nervous system. I brought this article to my FOURTH doctor and was, at long last, met with receptiveness rather than condescension.

My current doctor was totally upfront with me about not being ALLOWED to prescribe a stronger dose of doxycycline per established guidelines, AND was willing to actively look for a way to accomplish a similar goal within those guidelines – whereas other doctors have tried to make me feel stupid for asking about it. The second doctor I saw, an infectious disease specialist no less, told me that it was NOT POSSIBLE that I had Lyme Disease, based on the fact that my symptoms came back after two weeks of treatment with doxycycline. He insisted that I must have something else, strictly on the premise that treatment failure is “impossible.” This flies in the face of everything I’ve ever learned about antibiotics and their relationship with the diseases they treat, and is a shameful bit of misinformation to be spreading around.

I finished my fourth round of treatment a few weeks ago (this time a single dose of IM ceftriaxone paired with 21 days of oral doxycycline), and I feel better now than I have in the nearly two years since I found that stupid tick. ALL of the symptoms that lingered through my previous three successively longer courses of doxycycline alone (nerve pain, weakness, fatigue, brain fog, motor issues, and aggression – to name a few) are GONE without a trace. It’s like night and day.

Tests are not perfect. Disease respects neither geographical nor political borders. Treatment failure is real.

“Treatment failure is real.”

Which is the precisely point of Orac. A wrong diagnosis results in the wrong treatment.

You have 0 proof that those meds didn’t cure something else then ‘chronic’ Lyme.

Dear Doc, sorry for your ingnorance, I imagine it must be difficult to work so hard to get to where you are, and still what you provide is something negative. Find something positive to do will you, for yourself.

Find something positive to do will you, for yourself.

He has, by defining the difference between a made-up diagnosis and a real disease. What have you done that’s noteworthy? Because it sure isn’t your vapid comment.

In addition, I believe Orac’s day job involves saving lives, seems pretty positive to me!

I get the rational for using ‘fake diagnosis’, but I’ve found many who suffer from these various unsupported maladies often have self diagnosed first, then go looking for some quack to confirm what they already think. I remember back in the mid 90’s when I first heard people telling me they had ME, they all more or less were self diagnosed and despite no diagnostic test ever confirming there even was ME or that they suffered from it, they continued to insist they suffered from it.

Funny how these things go out of fashion in the woo world, I’m not sure I’ve heard someone tell me they have ME for at least 15 years, perhaps ‘chronic lyme’ will go out of fashion and be replaced by something new in a few years.

Lyme disease is real !!! The problem is over 50 different co infections ( that we are currently aware of ) one can get from tick bite and other bug bites. They are called parasites & micro organisms and many can survive 40 plus years in your body untreated can cause death. Some go with no symptoms . Sadly doctors are trained to treat symptoms, not look at big picture . Vet techs know more about zoonotic diseases than many doctors I’ve encountered. Chronic Lyme is an epidemic and there is no cure for Lyme . Lyme lives in organs and collagen not blood , USA testing for lymes is BS and needs to be changed in more ways than one !!! Again co infections , parasites & Lyme are ReAL!

Honey, if you think vet techs know more about any disease more than doctors, you have no idea what you are talking about.

Actually, veterinarians are more adept at looking at blood to diagnose diseases, considering it is a routine practice for them. Very few doctors actually do blood microscopy. Name a doctor that performs blood microscopy routinely, beside a pathologist?

I worked in a hospital lab for a year as a lab tech, and it’s med techs that look at blood, not doctors. Every now and then our head of infectious disease would want to see a slide, but rarely. And they rarely do live blood microscopy, which can be extremely helpful for diagnosing blood parasites, such as malaria, or our counterparts in the US, babesia microti and duncani. Borrelia spirochetes can also be seen in the blood, especially relapsing fever species.

Phil, of course lab techs should be the ones doing diagnostics. That’s their job, what they’ve specialized in, what they’re trained for. Of course the doctors don’t do it. That’s like expecting the doctor to take the X-rays as well as read them. Or to do the blood draws. Nope.

Also, there’s a reason that no one preferentially does a manual WBC differential (sorting out the different types of white blood cells by eye): it’s hard and slow and there’s way too much operator-to-operator variability.

I get that vets might have to because of the variety of species they work on, but in humans there are nice, reliable instruments for all of that.

Doctors that care more about financial gain than they do about treating their patients adequate NO MATTER what it takes! Every person is different — different genes, different genetic markers, different metabolisms/chemical metabolisms, different types of Lyme that vary from around the world and are extremely different from one another, different coinfections, different manifestations, different lengths of time being ill, different misdiagnoses (leading to different MAL PRACTICES — I received years of high doses of steroids starting at age 11 when I first got sick and all MA hospitals refused to administer my western blot DESPITE my family begging to do it and pay out of pocket ….. something is undoubtedly F-ED up there!!). And these doctors so close-minded, lacking intelligence and innovative thinking abilities talk on and on about antibiotic treatment and how terrible it is….. well guess what you ignorant “DOCTORS”, you’re hyper focusing on a treatment OF THE PAST! WTF! Move on, move with the times, move your thought process to keep up with the rapid pace in which bio-tech and new treatments are being discovered you lazy jokes of doctors who will eventually have they’re licenses pulled if they keep this bullshit ancient school of thought/ treatment for CHRONIC LYME DISEASE, YUP I SAID IT YOU MISINFORMED, UNINFORMED DOCS WHO DIDNT EVEN ORIGINALLY GO TO SCHOOL FOR LYME! —PS, even if you did, I’d never go to see you even if I felt you were compassionate, well educated doctors in the AUTOIMMUNE DISEASE specialty (opposed to the corrupt infectious Disease docs such as ALLEN STEERE FOR EXAMPLE, THE PHYSICIAN THAT MADE MILLIONS OF LYME PATIENTS UNABLE TO GET DIAGNOSED AND THEREFORE TREATMENT!!!). The future of healing whatever the F these right fighting docs want to rename “Chronic Lyme Disease” will not be cured by antibiotic because NEWS FLASH:::THERE IS NO CURE FOR LYME THAT EVEN EXISTS. Treatment does NOT have the same definition as CURE. That being said why is there so much confusion that Lyme Disease and coinfections can so easily become chronic OR go away (into remission) and then reappear at any point in time when a patient’s Immune system is being challenged and they are not on IVIG to protect them from autoimmune flares…..??? I believe in being THE CEO OF YOUR OWN BODY AND HEALTHCARE. Why? Because Lyme has been around being used as
Biological warfare for thousands of years and yet the medical community HAD STILL FAILED ALL OF US LYME WARRIORS AFTER HUNDREDS OF YEARS TO GET THIS RIGHT —- our healthcare system is far from dependable; they put the politics, right fighting, and all $$$$ before even thinking about how to get people well who have been sick in many cases their whole live like me. TRUST YOUR BODY, ALL HEALTHCARE EMPLOYEES ON EVERY LEVEL ARE EITHER CROOKS THEMSELVES OR SURROUNDED BY CROOKS THREATENING THEM!!! Antibiotics are a think of the past for “LATE STAGE LYME VICTIMS”. Speaking from personal experience as well as experience working for the most renown Lyme Nonprofits, doctors, and researchers from all around the globe, here’s what concerns me the most. Just as we see right here, doctors are more focused on renaming the disease to gain $$$, fame and diagnostic codes than they are about gaining the cutting edge info about what treatments are ACTUALLY WORKING IN YEAR 2019 – news flash, we’ve left the 70’s you self righteous nay saying Doctors that are quacks yourselves (just the “evil group”; not to be confused with LLMD’s). PATIENTS KNOW MORE THAN DOCTORS HAVING EXPERIENCED THIS ILLNESS FIRST HAND AND HAVING TO EDUCATE THEMSELVES EVEN MORE THAN DOCTORS TO INSURE NO ASSHOLE DOCTORS MAKE THEM EVEN SICKER!!!

That all being said, I am now 26 — I have lived battling Lyme (CHRONIC LYME THAT IS) for over half my life, soon to be 16 years. Why? Because uninformed and corrupt doctors DID ME WRONG as a child.

What they really need to be taking about and helping patients have access to without losing their houses many may be wondering…? ———>> HYPERTHERMIA AT 107 degrees for 6 hrs at least twice over two weeks if not more, then an intense detox week remaining as inpatients ———-> then the most healing treatment of all to repair the damage: STEM CELL TREATMENTS WITH GROWTH FACTORS!!!! IVIG should be a weekly/monthly treatment to have religiously except for before during and right after Hyperthermia.

Jokes on you incompetent QUACK DOC that started all this mayhem on this insulting and idiotic web sight, you’ve got it ALLLLL wrong. Step up or step away, you’re hindering the ability to regain health for what’s more like 2M (not 300,000) patients lives per year.

Quit your bullying of MY DOCTORS THAT SAVED MY LIVES AND my close friend who I will not mention by name after this message who’s photo you used above and shamed her vulnerable and powerful story about her journey of healing from CHRONIC LYME DISEASE that Dr. Oz simply shined a light on to give us Lymie’s the care we NEED AND DESERVE. — From real doctors, not inadequate doctors like you who only bring Lyme to the table for a negative light to be shined on it claiming “Lyme is fake”. How about you go find a cure and come back and make a public statement then? Who cares wtf it’s called, all we want is a CURE. NO ONE actually cares what the medical field calls is as long as we are treated with JUSTICE (dropping all horrific stigmas and providing funds for necessary measures patients MUST TAKE) and FIND US A CURE!!!!! Stop hyper focusing on who patterned what name for this insidious disease (besides you B wanting to own the patent {$$$$$} right a mental bell…?!?🤬🤬🤬). Get us a cure and then name it whatever the fuck you please. You are wasting countless lives — most of which are children who are the highest risk of contracting Lyme Disease just like me, and there for killing the future generations that have to come in and clean up this whole entire mess doctors like you and Steere etc. are responsible for creating when you should’ve been focusing on treating the 6th fastest growing infectious disease epidemic WORLDWIDE. <—- Yup! Might want to read that one again.

I will never have trust or hope for the medical community ever in my life. People like you have fucked my life up forever when I was I child and trusted the medical community the way one is told to, the same way you trust your parents to keep you safe when you are a child. And you greedy imbeciles dropped the ball from day one and never even could manage to pick that ball back up again in 16 years to make this right. TO MAKE MY LIFE RIGHT after YOU ALL FAILED ME. So, thank you to the medical community — yes you are responsible for my illness to date and for half a million dollars in medical debt when I’ve always had the gold card medical insurance, not to mention DUAL health insurance – but hey, remember how you said chronic Lyme disease is FAKE — well, that makes my 500K debt your fault. So yeah, great job right fighting, I’ve never seen such a morally corrupt industry in my life and wouldn’t believe the BS that goes under the radar and labeled as ethical unless I’d experienced it myself. You’ve made me a stronger, more resilient, patient, empathetic, driven, courageous, inspired, confident and passionate girl due to failing to help me in anyway possible but that’s because I’d be dead if I didn’t embrace what My CHRONIC LYME DISEASE journey towards healing taught me. Without the wisdom a child must gain by default being forced to grow up overnight when the cold hard facts of chronic tick borne illness slapped me in the face as a kid, I wouldn’t be me. Without finding the light in this dark daunting world of Lyme (aka my substantial character and personal growth that taught me my passion in life is to help other people and leave a legacy of change in the corrupt Lyme world), I would have killed myself long ago for the torment of the physical struggles of Lyme AND The public and private shaming and constant doubt of actually being sick due to the profound Lyme stigmatization, illegitimacy claims, lack of validation making my entire world think I was certifiably mentally ill due to LAZINESS, and the list goes on and on forever. But I saved myself from your corruption, found a passion to love for, and I can only hope and pray all Lymies like me can do the same and stay strong until one of us PATIENTS find a REAL cure to get us all out of this dark hell. Don’t even bother wasting your time anymore on this useless title shit that patients don’t even care about. Give us the money you receive so we can all go get the treatments we need so we can stop losing homes over paying for dire treatment to get well and do your job for you. Textbooks are useless and so is your fancy schooling when all of us patients have studied our own bodies and friends alike for quadruple +++ the amount of time you losers went to school. Get off the internet and do your job. We’ve had enough traumatic labels and accusations and you certainly have A LOT of work to do and A LOT of time to make up for so use your time like a PHD grad should be. If only the healthcare system cared as much as the patients do and put in the time in the correct places like we do. Then maybe together we could move mountains. But you people “doctors” don’t have your life on the line the way we do, you’ll never understand how to commit to finding a cure and a manageable life for all Lyme patients the way we do.

Simply put, you don’t GET IT, till you ‘GET IT’.

Lyme lives in organs and collagen not blood

Madam, I think you might be unclear on what collagen is.

This doctor is the biggest QUACK of them all and that is putting it nicely! He wont get it til he “gets it”! My lyme doctor saved my life!

A certain amount of Munchausen’s-by-Proxy shows up in the Chronic Lyme swamp. There is one NZ case where a mother devotes her life to looking after her invalid daughter, who supposedly contracted LD from being bitten by a kangaroo tick. In Australia. The mother has given up her career as a nurse to focus on her daughter. Umm, so many red flags.

There are regular fund-raising appeals, and the daughter goes off to the US to receive the latest Bio-Medical treatment from some Chronic Lyme quack or another, improving wonderfully… but each time she relapses back to invalid status as soon as she returns to NZ and comes back under her mother’s care.

Ther is quite a controversy here as to weather Lyme disease exists in Aus as we don’t have any of the ticks known to carry it.

I think the latest from the health authorities involved is that we may have a “Lyme like illness” but this is not proven. LLI is one of those catch all diagnoses that has such a vague constellation of symptoms that it’s pretty useless as a diagnosis. Considering the paralysis tick is rampant here and it carries the delightfully named tick typhus I’m thinking that Lyme disease might be the lesser of the evils.

What is the difference between lyme diseases and morgellons disease? I am being treated for lyme, but my doctor does say that I have lyme. I am not crazy! This is real! For those of us who are suffering from it. IT HARD! What is the answer?

Me

I was healthy and had two healthy pregnancies. At 30 years old I removed a tick and later had bullseye rash, which I mistook for a spider bite. Forgot about it and eight years later became bedridden, when I had been running three miles a day previously. Chronic lyme is real if you dont get treated right away.

What you’re describing is not Chronic Lyme Disease. It’s untreated Lyme Disease. They are not the same thing.

I really really like this change in terminology from fake disease to fake diagnosis. A fake disease sounds like you’re telling somebody who is suffering that they’re making up their suffering (which, honestly, is an accusation that is incredibly familiar to chronic disease sufferers). Calling it a fake diagnosis erases, in my mind, the implication that the symptoms are what are being faked.

So, thank you! This is great!

Isn’t the main problem for chronic sufferers that they get NO diagnosis, or some euphemism for “it’s all in your head”?

“It’s all in your head” definitely doesn’t mean it’s not “real”! Aren’t our brains organs just like everything else in our bodies, and thus just as susceptible to disease as all these other bits of stuff inside us? If someone dared to tell me that my suffering was “all in my head”, then I’d shoot back: well then, tell me what to do to cure what’s wrong with my brain then! I cannot will my way to lowering my blood pressure or lowering my cholesterol levels (no matter what adherents of the “law of attraction” think), so why on earth do people think that those who suffer from mental illness can will themselves out of that condition? There seems to be some kind of reluctance to admit the fact that mental illness is real, and is probably the one place where vitalism still seems to persist in modern medicine.

I don’t understand what you’re fighting against. People suffering? I didn’t know what Lyme was until both my son and I got it after camping. We were treated with antibiotics but our symptoms have stayed with us. Who cares what it’s called. Help us find a cure instead of spending your energy pretending it’s fake. Are you just trolling/flaming for attention/ad revenue?

Do you see any ads on this page, genius? Did you bother to look before posting your comment (talk about the pot calling the kettle black)?

If you have some serious symptoms you should want to get to the bottom of what actually ails you. If you believe it’s due to something which is not what it’s due to (and this is your situation) you are unlikely to find out what the actual problem is and take appropriate steps to correct it. You should be trying to do that, at the very least for your son if not yourself. If you don’t, if you continue as you indicate you are in your comment, you are condemning yourself and your son to needless suffering.

2019 John Hopkins study

“SCIENTISTS ISOLATE SLOW-GROWING VARIANT LYME BACTERIA FORMS THAT CAUSED SEVERE SYMPTOMS, RESISTED STANDARD SINGLE-ANTIBIOTIC LYME TREATMENT IN THE MOUSE MODEL”

https://www.jhsph.edu/news/news-releases/2019/three-antibiotic-cocktail-clears-persister-lyme-bacteria-in-mouse-study.html

“The slow-growing variant form of Lyme bacteria, according to the researchers, may account for the persistent symptoms seen in ten to twenty percent of Lyme patients that are not cured by the current Lyme antibiotic treatment.”

“This post-treatment Lyme disease syndrome has been controversial among many doctors, in part because studies of these patients usually have failed to show that Borrelia bacteria can be cultured from their blood, especially after treatment—a standard method for revealing the presence of an infection or relapse. However, Borrelia, like many bacteria, can switch under low-nutrient conditions or other stresses from their normal fast-growth mode to variant forms as in “stationary phase” with little or no growth.”

“In this new study, Zhang and colleagues grew stationary-phase B. burgdorferi and isolated two distinct no-growth forms, called microcolony and planktonic forms. They confirmed that these forms are resistant to standard antibiotics such as doxycycline and even two-drug combinations used for treating Lyme disease. They also showed that these stationary-phase forms, compared to normal-growing spiral forms of B. burgdorferi, cause worse Lyme disease-like symptoms in mice—chiefly inflammation and joint-swelling. However, treating these mice with the combination of daptomycin, doxycycline and ceftriaxone effectively eradicated the infection.”

Time will tell if this is also the case in humans.

I respect the opinion of real disease false diagnosis when it comes to chronic Lyme as being sometimes the case but post Lyme disease syndrome or Lyme disease only diagnosed years after infection would seem to indicate that there are chronic or chronic looking instances of Lyme disease. Practically speaking though, what else would one test for? This article seems to assume that chronic Lyme patients are patients with symptoms who were not taken seriously enough for their symptoms to be properly investigated. Is there a list of what to test? To be totally anecdotal, (I know) a Lyme patient I know went through years of testing and investigating by a medical team who knew her well enough to see the disturbing amount of change and then she spent years attempting to treat it a psychosomatic illness with therapy all while believing chronic Lyme to be a fraud. If there was something out there to test for she probably did it and then resigned herself to having some sort of psychosomatic illness while mental health professionals pushed her to go for more medical testing because her symptoms did not seem psychosomatic. She saw an LLMD when she was convinced that her quality of life couldn’t really get worse than it was, even from quackery. An intense antibiotic cocktail turned things around for her almost immediately (getting back to full health took longer). An article like this seems useless without any starting points for differential diagnosis. There are unfortunately many so called Lyme doctors who take advantage of people, but there are also ignorant medical professionals who dismiss possible advances in medicine. The reality of one does not prove or disprove the existence of Lyme doctors who can treat patients and heal people. Also if the disease is real and they find treatment that works for them, who cares what they called it or how they treated it, they’re getting better; CDC positive or not.

If it was a placebo effect then any of the previous efforts and treatments could have had that effect, but they didn’t. This was definitely not the first treatment tried nor was it anything she felt was going to work at that point since her belief at that point was that the illness was indeed psychosomatic. If the antibiotics were indeed targeting something other than Lyme she didn’t have any signs on any of numerous blood tests of what that might have been.

If the antibiotics were indeed targeting something other than Lyme she didn’t have any signs on any of numerous blood tests of what that might have been.

“Intense antibiotic cocktails” don’t “target” anything other than one’s wallet and the market for toilet paper.

If it was a placebo effect then any of the previous efforts and treatments could have had that effect, but they didn’t.

You obviously don’t understand the placebo effect. The placebo effect arises from people thinking they have been provided with a treatment, when they haven’t and therfore report they are feeling better. If someone doesn’t believe an innefective treatment is effective for their condition, they won’t believe they are getting better.

I sympathize with Abby Hartman’s son…I, too, have hyper flexible joints, particularly shoulders and elbows. I used to “pop” my shoulder out of joint as a party trick, and do all kinds of contortions just for fun…and NOW (post age 40) I suffer from chronic pain because of it. Turns out your joints wear down after a lifetime of abuse. D’oh.

My nephew has this as well. It gave some some issues when he was doing parkour, and he quit doing it.

The condition of an individual’s life has been compromised and a problem is identify; something we all agree upon….

Why continue to literally fight a battle, that clearly is not your own, and utilize the little knowledge you do have to help those in need?

Is empathy really that difficult? …

We both know it’s not so simple.

This unknown aliment truly threatens your intelligence, to the extent that you would rather degrade the individual, than focus on the bacterial infection itself??

We respect the scientist going after the etiology and pathology of a host’s bacteria for greater research? … But, what about a man with little to offer and too much baggage to conquer? Only an ego such as that would aim to focus on biology and somehow shift upon the group of those in pain. 🤨

😂😂🤣 Speaking from someone battling Late Stage Lyme (that fake one!), I will say, you win. Truly tho, you made your point.

Respectfully or not, you need more help than this disease will ever degrade from my existence.

But, keep your head up Doc and just remember the following…

Knowledge is power, but powerless if you do not aknowlegde it.

Annnyyywhhhoo, your dumbass made me smile today. I appreciate you, may you have a blessed day. 🙏😇

What’s empathy got to do with it? You think that just because someone is suffering they should be told costly lies that make them feel better? How are they going to feel when they are bankrupt and still in pain? Nobody told them they were wasting their money. What kind of morality is that?

It think it’s Southerners who’ve made a minor art form out of saying “Bless your heart” and making it come out sounding like “You’re an a$$hole”

Leslie, have you actually read the above blog post? To quickly recapitulate, Orac has said the focus should not be that the symptoms do not exist, but that the diagnoses of LLMD and their ilk are wrong and that there is little or no actual evidence to support the existence of an actual “chronic lyme disease.” He spends a substantial part of the post explain the problem. Perhaps re-reading the concluding paragraph may help you.

I’m under no illusion that a simple change in terminology will lead patients with fake diagnoses to be less hostile to science-based medicine. Nor am I under any illusion that medicine does anywhere near as good a job as it should deal with chronic symptoms that don’t fit easily into a specific disease. On the other hand, language matters, and there is utility in trying to be as clear as possible. Using the term “fake diagnosis,””quack diagnosis,” or “pseudodiagnosis” does help to remind me (and, I hope, others) to take the patient’s complaints and symptoms seriously even if I can’t explain them now and to put the blame for quackery where it belongs, on the quacks, by reminding myself (and, I hope, others) that it’s the quacks who make the fake diagnoses, not the patients and that the answer to helping poorly-understood symptoms is not pseudoscience.

Leslie, have you actually read the above blog post?

I don’t get the impression she did or if she did, she actually cared to comprehend it. Instead she chose to unleash her faux indignation for having her faux diagnosis challenged and pretend she’s above all of that with a WASPy insult.

I sense a disturbance in the spacetime continuum. Random and gratuitous capitalization has been replaced by random and gratuitous emojis.

I have numerous friends who have been visiting a StopLyme practioner who claims to rebalance your body’s ph and thus effect a healing. He uses two magnets of opposite polarities along with pressure on acupressure points to reset the brain and begin the healing process. Many report marvelous results from this therapy (using Biomagnetic theory but with the coined name Craniobiotic ). I have searched these sites for comments on Biomagnetic therapy, muscle testing and clearing with acupressure, and find no comments or scientific studies to prove/disprove these therapies. Is anyone familiar with these methods?

I’d die of old age before finishing the hahahahahahahah that this post deserves .

It looks like much of the hoohah about body pH alterations in Lyme disease comes from Dr. Darin Ingels, whose website bio refers to him coming down with Lyme after completing medical school and residency. Read a little further and it turns out he got a B.S. qualifying him as a med tech, then went to naturopath school, so he’s an N.D. (he’s also billed as a “clinical microbiologist and immunologist”, though no training to qualify as such is listed).
I know of nothing outside of the realm of fantasy to suggest that Lyme (or ”chronic Lyme” disease alters body pH, or that any intervention, dietary or otherwise can “normalize” body pH (your own body does that for you, unless you’re suffering from some types of poisoning or are deathly ill, for instance with a disease that radically affects lung and/or renal function).

He uses two magnets of opposite polarities

That’s quite a feat. Usually, a magnet has two ends of opposite polarities (easy to prove with two magnets: one end of each will be attracted to a specific end of the other magnet and be repulsed by the other end).
No, cutting a magnet in two doesn’t separate the two ends. It either demagnetize the magnet or create two smaller magnets, each with their own two distinctive ends of opposite polarities.

along with pressure on acupressure points

Has this doctor been trained by the Hokuto Shinken school and knows all 708 keiraku hiko? A lesser-knowing man may hit the acupressure points in the wrong order and make you head explode.
Also, I hope he checks his patients for dextrocardia situs inversus. The acupressure points follow the blood vessels, including the heart, and in such patients they will be inverted as well.

OTOH, an honest care provider would just call this a nice massage of the scalp. That sounds quite lovely.

He uses two magnets of opposite polarities

Maybe the ‘M’ in “LLMD” is for ‘monopole’ in this case, with unappreciated significance outside the healing arts.

Well, if this guy actually was “reset[ting] the brain” then what he’s doing is basically killing someone by wiping all their existing neural connections and eliminating their memories and personality. Obviously he isn’t doing that or no one would be reporting any “marvelous results” so I’m going to go with this guy is 100% bunk and you should run, not walk, away from him.

Also, are these “marvelous results” reported in online reviews? Because those are just ripe for fiction (ie, they’re all written by the magnet guy).

This is one case where there aren’t any studies because there’s nothing there to study.

Would not biopsies and modern molecular biology methods (genome sequencing) be capable of detecting if Borrelia were still present in a patientt with “chronic Lyme disease?” Even if biopsies were not possible for some reason, I would think that there would be opportunity for work on cadavers of people who supposedly had chronic Lyme at time of death.

To play devil’s advocate…
The bacteria (or at least their DNA) will have to be in the tissue being sampled for them to be detected.
If the bacteria are not circulating in the blood, a blood draw will likely not reveal them. If they are hiding in some important organ (like some neural tissue), biopsies are… problematic, and unlikely to be done routinely.
That being said, cadaver study has indeed a lot less limitations.

That being said, second take, the fact that long-term treatment with antibiotics seems to do more harm than good is in itself a strong argument that “chronic lyme disease” is the wrong diagnosis. Occam’s razor would suggest that if the proposed treatment isn’t working that much, then it’s because there are no bacteria for the antibiotics to kill. At the very least, it would suggest to stop with the antibiotics and keep looking for other treatments.
Special cases – improperly treated or untreated lyme diseases, where a new round of antibiotics does seem effective. But as pointed above, these cases are better called “untreated”, not “chronic”.

Indeed those methods should work, although who knows how many biopsy samples you would need to collect and test. Proving a negative is always the challenge, and there will always be someone saying that you missed it, that you didn’t use X tissue, or your Y test isn’t sensitive enough or or or.

My son tested positive on the C6 Peptide ELISA at Mayo Clinic in 2018 after contracting Lyme in 2004 and being treated with antibiotics off and on for years. His doctor followed up with a provoked DNA test by polymer chain reaction (a 100% specific test) that was positive, so LIVE spirochetes are still present. You need to talk to the head of the Lyme and Tick Borne Diseases Research Center at Columbia University, Brian Fallon, and other knowledgeable and respected MDs and researchers in the field about the chronicity of this disease.

My son tested positive on the C6 Peptide ELISA at Mayo Clinic in 2018 after contracting Lyme in 2004 and being treated with antibiotics off and on for years.

How do you know it wasn’t a new infection?

His doctor followed up with a provoked DNA test by polymer chain reaction (a 100% specific test) that was positive, so LIVE spirochetes are still present.

There is no such thing as a “provoked” DNA test and PCR stands for polymerase chain reaction. 100% specificity =/=100% sensitivity, they are different measurements and the DNA assay is not 100% specific without knowing what test it was. A positive test does not mean an infection, let alone an active infection; other tests are required to determine an active infection.

When you think about it though, is it that surprising fake clinicians give out fake diagnosis?

”How do you know it wasn’t a new infection?”

Or an inadequately treated persistent infection.

Or an inadequately treated persistent infection.

There is that of course but I wanted to emphasise the possibility of a new infection because the Lyme cult doesn’t seem to grasp one can have multiple Lyme infections. I’ve had it four times.

Hopefully everyone knows that comment isn’t me and Orac will delete it.

Wait, I’m confused: the 9:49 a.m. and 2:09 pm posts appear to have the same Gravatar ID.

^ In any event, it would be “Jill”; I’m starting to have suspicions whether “Rebecca” is the same entity, as well.

I plead lack of caffeine for my making of a comment mess. Or cognitive impairment due to despair. Or something.

Hard to consider new infection, as patient is not exposed to the outdoors and spends most time in bed. Doctors at Mayo-Rochester said not a new infection. Patient has been treated for co-infections, and patient was not under-treated by antibiotics; in fact, treated with too many for too long for my comfort, but they did help him, and when he discontinues, he relapses. But we try to keep the dose down as much as possible.
I apologize: Yes, it is polymerase chain reaction, not polymer . . .
I did not use the word “sensitive.” Used the work “specific,” and I do understand the difference. For those reading who are not doctors, PCR is not very sensitive because it is so hard to pick up the spirochete after the infection has hung around for a long time and been treated with antibiotics. Usually it does not stay in the bloodstream.
The doctors, very traditional and respected MDs, considered my son’s DNA test for Lyme positive because of the specificity of the PCR test. I am not a scientist, but I have to believe they know what they are talking about. They are not of the “quackish” variety; actually, they are quite conservative. It was explained this way in so many words: DNA is irrefutable.
I apologize for using the work “provoked” inappropriately. I meant that my son had to be off antibiotics for a long time, then resume certain ones for a certain number of days before sample collection. The testing lab is approved by the FDA.
If you review the work by Brian Fallon and his center at Columbia University, you will find studies on Chronic Lyme. He is one of the most knowledgeable Lyme experts in the world. Live spirochetes have been isolated in the brains of deceased patients who purportedly were treated adequately for Lyme. I will forward a paper or two, then I would like to be removed from this forum. I merely wanted to respond because the evidence does support, albeit perhaps in many fewer cases than the quacks are diagnosing, the existence of Chronic Lyme, and those of us who have experienced it need to do a better job of presenting information credibly. We should be working together, as many on this forum have pointed out. Thank you.

Why did you use my ‘nym for yours?

Hard to consider new infection, as patient is not exposed to the outdoors and spends most time in bed. Doctors at Mayo-Rochester said not a new infection.

It can’t be ruled out and without more information, forgive me if I am sceptical of “Doctors said…”.

It was explained this way in so many words: DNA is irrefutable.

In the proper context such as repeated and validation tests but not necessarily in and of itself.

If you review the work by Brian Fallon and his center at Columbia University, you will find studies on Chronic Lyme. He is one of the most knowledgeable Lyme experts in the world.

Well, I have to question him somewhat when he insists on using the term “Chronic Lyme Disease” when it should be “Lyme Disease” or “Post Treatment Lyme Disease Syndrome (PTLDS)” depending upon the patient’s status. Otherwise, yes, looks like he’s doing good work.

I merely wanted to respond because the evidence does support, albeit perhaps in many fewer cases than the quacks are diagnosing, the existence of Chronic Lyme, and those of us who have experienced it need to do a better job of presenting information credibly.

I agree to some extent, but I think the use of “Chronic Lyme Disease” will be associated with quackery. As I understand it, there may be some evidence that non-human primates have had active Borrelia isolated post-antibiotic treatment and we should remain open to the fact that some, possibly your son, may experience that although I, for one, will remain sceptical until solid evidence emerges. Perhaps then, a new diagnosis can be established that will distinguish a treated, yet persistent Lyme disease.

Sorry to Science Mom for inadvertently using your moniker. I am not adept at using these sites. Will look up and share a research study tonight that may contribute to the conversation. Appreciate everyone’s healthy skepticism.

”…a provoked DNA test by polymer chain reaction (a 100% specific test)”

I’ve never heard of a laboratory test that achieved 100% specificity.

DNA is pretty much the Gold Standard; I mean, PCR is really reliable, so I feel you are quibbling. Even the C6 Peptide ELISA is said to be 98% reliable for antibodies, and I like those odds. If you had a cancer diagnosis based on DNA or PCR, I have to believe you would sit up and take note. However, I feel we should all be kind here. Rather than argue with one another, let’s try to help those who are suffering by sharing scientific research and earnest findings.

Brian Fallon and his team have really done some excellent work, both in terms of evidence-based research in support of persistent Lyme in live humans and also in bridging the gap between those who do not believe Lyme can be chronic and those who do. I really, really encourage anyone on this forum trying to learn about the chronic nature of Lyme to peruse Columbia University’s Lyme and Tick Borne Diseases Research Center site. Incidentally, Dr. Fallon just published a book titled: “When Lyme Disease Doesn’t Go Away.” Also, he does make a distinction between Chronic Lyme (you can call it Lyme, but I thought the argument was that Lyme cannot go rogue, especially after antibiotic treatment, and be chronic) and a Post-Lyme Syndrome. (i.e. Otherwise, who are the quacks other than those who choose to treat chronic Lyme super aggressively?)

There are many more research studies available now than there used to be. Here are a few that you can Google by title. They are published in respected journals, which are noted in (parens).

Borrelia burgdorferi DNA in the urine of treated patients with chronic Lyme disease symptoms. A PCR study of 97 cases. (Infection) [This is in support of PCR validity.]

Detection of Borrelia burgdorferi DNA in urine samples and cerebrospinal fluid samples from patients with early and late Lyme neuroborreliosis by polymerase chain reaction (Journal of Clinical Microbiology)–Maybe we should be calling “chronic” Lyme “late” Lyme.

Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis. (Annals of Medicine)

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease. (peer reviewed, don’t have journal in front of me at the moment) This study talks about finding live spirochetes in humans.

Survival of Borrelia burgdorferi in Antibiotically-Treated Patients with Lyme borreliosis. (Infection.)

Detection of Borrelia burgdorferi DNA by polymerase chain reaction in synovial fluid from patients with Lyme arthritis. (New England Journal of Medicine)

The list goes on and on, and you can look at sources used in the above studies to find others. Again, the Columbia University site is a great source of information. My son had an infestation of ticks in the Scottish Highlands, an area highly endemic for Lyme. The village where he acquired the ticks has a large number of debilitated residents. Brian Fallon’s site has reported that Lyme spirochetes from European strains after antibiotic treatment historically have been much easier to isolate in humans than for U.S. strains, which has made detection even more difficult here in the U.S. and perhaps why my son’s is easier to identify.

I wonder how many of those on this site arguing that Chronic Lyme is a quack diagnosis have endured years of suffering with this disease. It is devastating to families and futures in every way, and these patients deserve so much compassion, as they do not receive much understanding from society. In fact, they are scorned and labelled hypochondriacs. Their lives are impossibly hard. They are not going to die right away (usually), yet neither are they able to function in many cases, much less thrive.

Regardless of the reasons for our collective disappointment in quack doctors, I think we all have to agree that there are some very good doctors in the country and abroad who have done excellent scientific work to validate the Lyme spirochete’s ability to persist in the human body somewhere and in some form. Lyme is a stealthy and tricky pathogen, and we do not have all the answers. It is near to impossible to eradicate, time-consuming and costly, and thus less attractive to treat.

Please, in your earnestness for the truth, show compassion and keep an open mind. Science will win out, and the preponderance is beginning to stack up in favor of at least some strains of Lyme being persistent. In our family’s case, as is the case with some that a few of you on this site have ridiculed, antibiotics have meant the difference between the semblance of a normal life and a life that is beyond living hell, but I know that has to be lived to believe because it is so unbelievable on the face of it.

Thank you to all of you who are trying to make a difference. Signing off. . .

PCR is not approved by FDA – a plot, of course. Actually, it is hypersensitive, and prone to false positives.
Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease. This is published in on line predatory journal. Writer speculates, e.g., that bacteria would survive in semen. If this were true, you could not treat testis infections with antibiotics. Be more selective with your examples, please.
Perhaps you should simply stop taking antibiotics and try something else ?

DNA is pretty much the Gold Standard; I mean, PCR is really reliable, so I feel you are quibbling.

This is untrue. I work with PCR all the time. PCR is very sensitive technique and ypu have to be exceptionally careful to ensure you don’t get false positives through contamination. The more cycles you run, the more likely you are to amplify a contaminant.

Also provoked DNA test has no technical meaning. You cannot provoke DNA for a PCR test, so I am at a loss to what was done, but whatever it was it had tobe non-standard. I can only conclude you have been conned by whoever has been taking your money for this.

There’s a woman I’ve had a crush on since I met her – a former PhD candidate in anthropology – who I think probably fell for this stuff, sadly. She’s recently come back up for social air and is on social media again – she posted some time back that she wasn’t on antibiotics any more, at least.

She definitely was very, very sick at one point. I’m pretty sure part of it was PTSD related, manifesting physically – she went through some horrendously traumatic stuff when she was doing field work in Kyrgyzstan, which I won’t go into detail about – but I have no problem believing that there is/was a physical component, as well. Heck, for all I know she picked something up in Kyrgyzstan. But not Chronic Lyme.

I’m glad she’s doing better.

Off topic: I got all the stuff today at the pharmacy for starting HRT. Now I just have to work up the nerve to figure out all the needle/syringe stuff and stab myself. Wish me luck!

Alcohol wipes, deep breaths, and if you don’t have a sharps container yet use a plastic milk jug.

Good luck!

@ Jack:

Hey, that’s easy to learn ( FYI: I had to give insulin to a legally blind person and sub Q fluids to a cat with kidney disease)
Hope it works out well for you.

and sub Q fluids to a cat with kidney disease

Yah, 19 ga. The vet suggested that they come not to mind it when they feel better. Blind as well, due to earlier undiagnosed HTN. He still went out, though, and caught noisy bugs. I wish that vet were still practicing; he also came to my place for the penultimate rite.

Done and done! It was Sub-Q with a tiny needle; I barely even felt any sensation. The hard part was getting the stuff in the needle and all that. I fumbled the first injection needle and dropped it, so now I’m one short for the month. (Just have to call the doc, I guess.)

Sorry again to Science Mom about the post. It was an honest mistake. Please forgive me.

Your comment that many women feel marginalized and ignored in modern medicine is completely true. Where I work EVERY woman tells the same story: their doctor’s first response to any complaint is either “your getting older” or “its your imagination there is nothing wrong with you”. Because of this it took me 8 years (tha’ts right folks 8 years ) to get a correct diagnosis once. We are also allowed to be bullied and ignored.

“Where I work EVERY woman tells the same story: their doctor’s first response to any complaint is either “your getting older” or “its your imagination there is nothing wrong with you”.”

Maybe they all have the same bad doctor? Or there are serious communication problems, possibly two-way?

This viewpoint suggests that virtually all physicians are male, when the reality is one-third or more of doctors are women, with considerably higher percentages in certain specialties like gynecology and pediatrics. And the majority of physicians in the U.S. aged 44 or younger are women. That’s right, the MAJORITY.

So to whatever degree this complaint is valid, a solution might be to find a younger doctor, or at more importantly one who listens better. And be prepared to listen yourself to what they’re saying.

Especially the last bit. I have heard of people complaining that their doctors told them that their joint pain and breathlessness is due to their weight. People who weigh hundreds of pounds insisting that there must be something else wrong with them. Insisting on scans and tests. People complaining that their doctor told them it’s pointless to eat gluten free unless you have celiac. Your doctor may get it wrong but he or she is a hell of a lot more likely to get it right than you are. Despite the odd exceptions.

And of course if you get older certain functions might deteriorate. And getting older is part of life.

In his poem, “Cousin Euphemia Knows Best”, Ogden Nash concluded that “I once read an unwritten article by a doctor saying
there is only one cure for a patient’s female relative
who has read an article:
A hatpin in the left ventricle of the hearticle.”
Today we might leave out the word “female”, but otherwise oh, so true.

Oh, that’s a good one. I just got a book from the library of 650 poems by Ogden Nash and I look forward to quoting them extensively. (It’s book bingo season at my public library and “poetry” is a category. No one said it had to be good poetry.)

I just got a book from the library of 650 poems by Ogden Nash and I look forward to quoting them extensively.

I semi-heard an episode of On Being, which I usually dread, while laboring in the cat shelter tonight. This Jericho Brown fellow seems like he might be up my alley. Then again, I’m still a Brautigan fan.

Just to alert all be carefull about the idea that the chronic form of lyme disease doesnt exist or its fake. I agree that there are many quacks on the world that hold a doctor license and treat people with dubious treatments for dubious diseases. But be also aware that even licensed doctors practicing surgeries or advising any pharma treatments for any disease can be a danger to the public. For example, there are many reports about surgeons who forget surgery instruments inside the body after surgery. This is only an example that in every disease and in every licensed surgeon or doctor you will find mistakes, sometimes negligent mistakes, dangerous to health that has nothing to do with lyme. What i am arguing that just because some licensed doctor fail to treat some people, that doesnt mean they fail treatment on all the persons with Lyme. There are hundreds of people who die from taking antibiotics to treat some infection, even short antibiotic treatment, not only prolonged, and this people will say the treatment and the doctor was to blame and in some cases they may be right, but that happens everywhere, everytime, not only on LYME disease. Dont you find suspicious that people who advocate against this form of lyme disease defend that EVERYONE having this disease are being quacked and getting a dangerous treatment, being CHRONIC FORM of LYME DISEASE diagnosis the only problem? What about other diseases, what about other treatments that are dangerous to treat this diseases Tuberculosis is one example, The resistant form of the disease must be treated with multiple antibiotics for a year or more. Isnt that dangerous? Of course it is, but so more is the disease. For example, why would resistant tuberculosis be persistent/chronic and Lyme not? Activists and some doctors who fight against the truth about the chronic form of lyme disease, say there isnt any evidence that this form of persistent/chronic form even exists, they prefer to call it post treatment lyme disease syndrome and leave the patients suffering without any other explanation and dont give any alternative approach, they also defend that co-infections like bartonella doesnt exists, because if the blood works comes negative for bartonella then you are having a fake diagnosis. The evidence they provide is very limited and based on people who REALLY didnt have the chronic form. Im alerting everyone to be carefull with this doctors and chronic lyme haters. Why? you may ask? Because there are not aware of latest and all the evidence about the chronic form of the disease and the fact that co-infections like bartonella and even Lyme it self can have false negatives. For the reader here i will leave some of the hundreds of papers showing evidence for the chronic form of Lyme and after reading it be your own judge. This paper are independent and reported by diferente universities, medical centers, microbiologists. You can confirm the sources by yourself and conclude that the haters of this truths might be the true danger for the public. Of course you will find lots of papers against it, that why some call it LymeWars. Because there are dubious and limited trials done on people that didnt had the chronic form in the first place and this is easy to say thats its evidence that it doesnt exist. But i will give you some papers about the real truth, in this case you must be your own judge. Please see “author information” on the papers in NCBI to check for the authorities who reported. Last but not the least, on the second paper about bartonella, you will find that relying on doctors and activists againt chronic lyme form on the net who say co-infections like bartonella are fake just because the results are negative, can be fatal for people and they will hide this papers from you and from all the world, with all they got.

The Persistent Lyme Disease: “True Chronic Lyme Disease” rather than “Post-treatment Lyme Disease Syndrome”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6100330/

False Negative Results in Bartonellosis Diagnosis.
https://www.ncbi.nlm.nih.gov/pubmed/30730266

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