Maybe It’s Lyme
thecut.com
thecut.com
Also I find it weird how many Lyme stories are popping up on HN lately. Not a lot of sham science on here otherwise. Seems fishy.
https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-d...
> In some patients, symptoms, such as fatigue, pain and joint and muscle aches, persist even after treatment, a condition termed “Post Treatment Lyme Disease Syndrome (PTLDS)”.
> The term “chronic Lyme disease” (CLD) has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, it has also been used to describe symptoms in people who have no clinical or diagnostic evidence of a current or past infection with B. burgdorferi . Because of the confusion in how the term CLD is employed, and the lack of a clearly defined clinical definition, many experts in this field do not support its use.
In some cases the over exposure of famous people can be good, such as raising awareness about things that otherwise might be ignore (depression, breast & prostate cancer, dementia).
I will grant that 'famous people' may well be more likely to be involved with quackery, due their social environment and on average having more money to waste.
Sadly, I think many of these "famous people" (which, funnily enough, I hadn't heard of) are simply attention-seeking d-list personalities.
I've seen firsthand that this is not entirely true. My dad ended up hospitalized for a serious Lyme infection. He had Bell's Paulsy on the right side of his face. A thorough course of antibiotics saved his life. A decade later he still has issues moving the right side of his face, and his right eye tears up every time he chews.
The damage Lyme does to the body can be permanent. That doesn't mean long courses of antibiotics years later will do anything to help...but it's important not to lump the people who have long term complications in with the tinfoil hat wearing nutjobs who never had symptoms of a bad bacterial infection in the first place.
This is a sort of group version of the boy who cried wolf - if enough people run around fussing about something which isn't, those for whom it is won't be taken seriously.
Wait, giving yourself an air embolism? Yikes. I don't know the odds, but that can definitely kill you.
(It’s a popular treatment in the Lyme community but I’ve never seen any good evidence that really supports it, nor heard any actual anecdotes where it’s worked.)
Apparently some providers don't shake out all the bubbles after pumping in the ozone.
There's more than you might think. Any post about mental illness, exercise, or nutrition really brings them out.
There is this notion (which i also had in the past due to not knowing much about medicine) that doctors are almost all-knowing and all-powerful in treatments. Reality is unfortunately still very far from it. Imagine constant stream of people who have chronic untreatable ailments, are on various cocktails of medicines, often have some psychiatric issues (not enough for proper treatment, enough for them to be utter unrealiable pain in the ass), are variously addicted. Or they come with issue like 'chest pain' which can mean 50 different things, or nothing.
It is often a proper detective work, with very limited tools (if all tests are OK but patient is not, what to do?).
After realizing current state of affairs in medicine, my advice is simple - live healthy till 80 and then simply drop dead. Now how to achieve it...
Erythma Chronica Migrans rash and western blot blood test...
Apart from the first one in your list, do you think the other ones are "spiritual"? To me, giving those as a "final verdict" is not dissimilar to blaming a deity. Everything has a material basis in my book.
Myself, and you can see a few posts in my history about it, I was diagnosed with chronic mercury poisoning. I was fortunate indeed that I actually had clearly elevated levels of mercury in blood and urine - but that was because of some strange coincidences coming together. Normally someone like me would not be so easily to diagnose, in chronic exposure levels on the "highways" of your body (blood) are very low.
I had lots of issues that I ignored, I was fit and all the many many small issues (see some pasts comments for some of them) were easily ignored. Not because they didn't matter, they did make life inconvenient to say the least, and how far my brain was impacted I only realized in the years of chelation when I could suddenly comprehend things much, much better. You don't realize the impact yourself because you have nothing to compare yourself against, since the change is so slow and gradual!
If I had ever gone to a doctor with any of those symptoms I would have gotten exactly your advice: It's just stress, it's psychosomatic. Don't worry so much.
For what it's worth, my own doctor, researcher at a university clinic, thinks the heavy metal problem is vastly under-appreciated. For the same reason as was mentioned in this thread: It's really next to impossible to diagnose with what we have. We can only diagnose acute poisoning, meaning when it is still present in blood in large amounts.
Current teaching is "no amount of lead (but same for mercury, which is even worse - and both together are several orders of magnitude more toxic according to an LD study somewhere on PubMed) is safe" and many people are aware of it. But somehow this is too abstract for anyone who has not been impacted (or does not know about it, very likely when it happens). But anyone who shows up with mild symptoms is told "it's in your head". We can, sort of, make a connection between heavy metals and populations. But we are unable to use that knowledge for any individual, because while we can show that there is a population level impact we have no way to do the far harder thing and show that an individual has been impacted. So we have a disconnect between what we know and what we can actually do, since treatment cannot be done on the population level apart from what has already been done (but even so there's plenty of heavy metal exposure left, as became clear after Flint in headlines for far more places than just that one city and issue).
Just to clarify, I'm not saying "everything undiagnosable is a heavy metal issue", I'm saying everything has a material basis. Among them environmental issues play next to no role - for the simple reason that we don't have the means to diagnose them (even if we did get accurate numbers about what is stored in somebody's body we still have no way of saying of what that actually means). The problem is that "we cannot diagnose it" turns into "you have nothing, it's all in your head" because what you don't know exists does not exist. I certainly see why there is little point in teaching much about it to doctors given what I wrote, that there simply are not even good ways to diagnose it. One has to remember doctors are not researchers. They don't go for the novel ideas and the unknown, they are not supposed to work like a production line worker, albeit very well-paid ones: Use known-to-work methods for known issues. Next (patient)!
Or what if you had gone to a "lyme literate" doctor and been misdiagnosed with chronic lyme disease? Put on antibiotics for three years (like one of the patients in the story) with harmful side effects, and at enormous financial cost? Then you would have a whole bunch of problems in addition to your mercury poisoning.
I realize that it must suck for the patient, but in cases where no diagnosis can be made I think the best thing a doctor can do is just to say "I don't know", treat the symptoms as much as possible, and prescribe lifestyle changes (diet, exercise, sleep) in the hopes that things clear up on their own, or that some test eventually reveals some useful information. Better to do nothing than to actively harm the patient with ineffective treatments.
That's pretty much what I have been doing, when I was 19. But I became sick, saw a couple of doctors without a diagnosis and that prescrption would have sounded like: "Have you tried not being sick anymore?"
I had to wait for a NSAID to kick in to get down liquid food, had to sleep often, because I could only sleep for few hours at a time and everyday life was exercise enough. At that point blood tests for lyme were inconclusive, but the rheumatologist thought the symptoms warranted oral doxycycline, which cleared the symptoms within days. Maybe a lumbar puncture would have shown it, but I was asymptomatic before I was scheduled.
Like nosianu experienced, there was a long period where I thought, I just had to get my act together and it takes a while to conclude that something is seriously wrong. At some point, you take a doctor's educated guess, even if the treatment is harmful.
People don't want that, they want pills dulling the symptoms of their bad habits.
I think I said as much, pointing out that doctor's roles are a lot more "mechanical" than what most people assume and that obviously that means restricting what they do to the (more or less limited - depending on the area) set of diseases and treatments that can be (relatively easily) diagnose and treated.
The problem is that many of them don't and that you are send to a psychological treatment "it's all in your head".
Ongoing intravenous antibiotics is very dangerous to the recipient.
But it would also be interesting to find out how many things we considered to be diseases were actually psychological.
The latter is tricky because modern psychiatry doesn't really give us the notion of confirming that a condition is psychogenic. Almost all modern psychiatric diagnoses are diagnoses of exclusion (more or less) and do not carry any particular assertions about etiology. We can be reasonably certain that cases of psychogenic disorders do exist, but I don't think they tend to explain any preexisting diagnosis because the signs and symptoms vary so much.
That's the key to much of alternative medicine. Often they start with a conclusion and find supporting evidence. It's like a horoscope we project ourselves into it.
It’s also a picture of how actual medicine is incomplete and has failed a lot of people, leaving many suffering and looking high and low for whatever might work.
> Chronic Lyme becomes an identity, being anti-vax becomes an identity, and once a belief is incorporated into someone’s identity, it’s very hard to counter.
I think it echos a lot of issues we're dealing with today. Once a person "identifies" as something - political party, illness, anti-vaxx, etc. - it's like the brain becomes impervious to any information that might challenge their identity.