[HN Gopher] Sweeping chronic fatigue study brings clues, not cla...
___________________________________________________________________
Sweeping chronic fatigue study brings clues, not clarity to
mysterious syndrome
Author : rbanffy
Score : 68 points
Date : 2024-02-22 19:35 UTC (3 hours ago)
(HTM) web link (www.science.org)
(TXT) w3m dump (www.science.org)
| spondylosaurus wrote:
| > But several of those turned out to have underlying diseases
| that had been overlooked, including cancer, pulmonary embolism,
| and a muscle ailment called myositis that causes weakness and
| fatigue. The surprise diagnoses suggest that people told they
| have ME/CFS often receive inadequate care--something many
| patients already know. "It's a huge indictment of our medical
| system that they had to join a research study to find out what
| was wrong with them," says Mike VanElzakker, a neuroscientist at
| Massachusetts General Hospital.
|
| You see this a lot with "diagnoses of exclusion," sadly. In the
| absence of specific tests, you can only reach certain diagnostic
| conclusions by ruling out _other stuff_ first, but (particularly
| in American healthcare) we often don 't perform the rigorous
| well-it's-definitely-not-<x> workup first.
|
| Or, depending on the circumstances, people don't understand that
| certain conditions are diagnoses of exclusion to begin with and
| jump to conclusions, like assuming they have IBS when they
| actually have Crohn's. (Ask me how I know, lol.)
|
| There's the recent rise of "Chronic Lyme Disease," which many
| physicians have noted is a dubious diagnosis at best, but it
| seems clear that most of those people _are_ ill--just with
| something else. And that "something else" could be a positively-
| identifiable condition that they haven't been tested for yet, or
| it could be a legitimate diagnosis of exclusion, like ME/CFS.
|
| The problem, in either case, is actually testing people for all
| those other things first.
| jjeaff wrote:
| It seems like the most likely answer is that it is just a lot
| of different things in different people. Fatigue is a symptom
| in almost any and all illnesses.
| bombcar wrote:
| We also like to thing that doctors are able to extensively
| test and determine what is going on - but with many diagnosis
| and treatment, it's almost entirely based on patient self-
| reporting.
|
| We can test the blood for certain things, we can run other
| scientific tests, but for lots and lots of problems, we
| really don't have any scientific way to determine.
| spondylosaurus wrote:
| I mean, TFA (among others) have made the case that ME/CFS is
| linked to (if not outright caused by) a number of specific
| kinds of physical dysfunction... but it's true that fatigue
| is a symptom of countless illnesses, so it gets difficult to
| figure out which patients are suffering from which
| conditions. Hence what happened in this study when they tried
| to narrow it down to a pool of ME/CFS patients :P
| quickthrower2 wrote:
| CFS is very different. Fatigue as a word alone has different
| meanings to different people. They use it to describe the
| effect of driving for too long and you need a rest. Or a poor
| nights sleep. Or maybe you went hard at the gym or the bar.
| It is nothing like any of those things.
|
| A good tell is that physical effort beyond a point makes it
| worse, and you need to stay within an energy envelope or you
| get severe symptoms. All activity is physical effort not just
| say running. Putting the kettle on for example or refactoring
| a line of code.
|
| You know that nice feeling when you feel better after you've
| been sick. You don't feel that ever again.
| 8A51C wrote:
| Very accurate. The way I try to describe it, like a worn
| out recharchable battery- only charges to 80%, runs down
| quickly when you try to use it and takes ages to charge
| back up again.
|
| This is in some way trivialising the suffering, but I find
| helps people understand a little what it's like. At it's
| worst whilst I might be able to get out of bed and use the
| toilet, it takes a level of forethought, planning and
| effort that is unreasonable.
|
| Suffered with fatigue since stem cell transplant in 2011.
| freedomben wrote:
| Yes, people don't understand that even very basic self
| care like brushing your teeth or going to the can be
| completely overwhelming. Just receiving a text or an
| email when you're feeling can be crushing
| quickthrower2 wrote:
| Sorry to hear that. I am embarrassing mild compared to
| most stories I read on r/cfs (which is why I just lurk)
|
| It has taken years to build back up to almost full time
| work without it being a boom/bust affair.
|
| I can't imagine the more severe cases because you need
| energy to manage the problem, like a catch 22.
| qwertox wrote:
| Thank you for sharing this. I won't tell my situation, but
| at least I know that exercising does help me, so CFS is
| very likely not the problem.
| jwells89 wrote:
| To make all this worse, I believe the issues outlined may be
| magnified by distance from major urban centers.
|
| I have family in a rural part of the US and the quality of care
| immediately available there is poor, with only marginally
| better treatment available within an hour's drive. To have more
| options than that, one is faced with a multi-hour drive and
| most major metros where quality care is most plentiful is
| several hours away.
|
| There's been several people I've known or heard of out there
| who've for years not been able to pin down exactly what the
| root causes of their ailments are because the local physicians
| aren't thorough and/or knowledgeable enough. It's especially
| problematic for those on the older end of the age spectrum who
| even if they're still able to drive, can't manage such lengthy
| trips on their own very well.
| spondylosaurus wrote:
| Absolutely. Hell, I live in a major urban center and the
| healthcare here _still_ sucks. Years of getting the runaround
| and _" Wow, that's so bizarre, you should go to the Mayo
| Clinic to find out what's wrong with you"_ only for an answer
| to emerge from something as banal as a colonoscopy.
|
| On that note, I maintain that the opioid epidemic hit the US
| uniquely hard precisely because of the lack of access you
| describe. (And I'm always surprised how few conversations re.
| the opioid crisis ever mention it.)
|
| When it's hard to find doctors, when it's expensive and time-
| consuming to visit them, when tests aren't offered or are too
| expensive and time-consuming for people to pursue them, when
| the medication for the condition they finally get diagnosed
| with is expensive and requires you to jump through a million
| prior authorization hoops to acquire... of course they turn
| to cheap, generic painkillers.
|
| We're not good at treating the underlying causes of pain, and
| the treatments that do exist are too often out of reach. We
| don't have adequate safety nets. People need to work, and it
| drives them to mask their symptoms.
| freedomben wrote:
| painkillers aren't even an option anymore either, unless
| you're older (by that I mean 60+), and even then a lot of
| doctors are adopting policies of "we never prescribe
| narcotics"
| quickthrower2 wrote:
| Urban centres give you choice but not necessarily better
| doctors in general. You still need to shop for a good one.
| Reviews don't help. Cost is not an indicator.
| s1artibartfast wrote:
| I think people have strangely high expectations from doctors
| and medicine in general.
|
| They don't just _want_ their problems to be diagnosed and
| fixed, but _expect_ solutions to be determined and implemented
| in a way you dont see elsewhere.
|
| People don't go to their accountant and expect them to just
| find a way to make their taxes zero.
|
| I wonder if it stems from the fact that most medical problems
| people experience do have trivial and complete solutions, so
| that it isnt until people get older and more experienced that
| they realize not all problems are solvable.
|
| I work with dozens of doctors, and none of them are omniscient
| or omnipotent. They generally work hard, but dont have all the
| answers.
| notamy wrote:
| http://archive.today/lmA13
| CPLX wrote:
| > ME/CFS is unquestionably biologically rooted, says Avindra
| Nath, clinical director of the U.S. National Institute of
| Neurological Disorders and Stroke, who led the study. It revealed
| brain activity differences, along with immune and other
| abnormalities, in 17 people with ME/CFS compared with 21 healthy
| controls
|
| Not expressing my own opinion on the condition itself but this
| sentence makes absolutely no sense.
|
| How on earth can you have a sample size that tiny and then use
| the word "unquestionably" as if you mean it.
|
| You could fit the whole study in a school bus. Being wrong about
| one person would be statistically significant.
| bombcar wrote:
| The sample size worries me less than the cause/effect swapping
| possibility - people who think they have X might cause
| abnormalities that show up biologically. We _know_ it can
| happen with placebos.
| derefr wrote:
| > How on earth can you have a sample size that tiny and then
| use the word "unquestionably" as if you mean it.
|
| Because the first sentence is the lead researcher's opinion
| (that they likely already held going into the study, due to
| overwhelming _clinical_ -- rather than _scientific_ --
| evidence); not an expression of the credence that you should
| hold in the hypothesis, coming from null priors, _due purely
| to_ the Bayesian evidence presented by the study.
|
| A more pedantic rephrase of the first sentence you quoted,
| would be something like "no doctor who regularly sees ME/CFS
| patients would doubt the claim that ME/CFS has an organic --
| rather than psychogenic -- etiology."
|
| Those doctors now just need to conduct enough studies to prove
| that claim to the satisfaction of people who _aren 't_ doctors
| and who _don 't_ regularly see ME/CFS patients. This is the
| first step of that.
|
| The result that such studies expect to find -- at least to
| these doctors -- isn't in question. "A pile of 1000 independent
| anecdotes of case-histories from professional clinicians that
| all corroborate the claim" just needs to be replaced with an
| equally-sized "pile of laboratory-condition-verified tests done
| in a way standardized enough to be aggregated as data and
| T-tested."
| jdietrich wrote:
| It also doesn't really mean anything unless you're a strict
| mind-body dualist, because the brain is an organ. People with
| depression also have brain activity differences and are more
| likely to have elevated inflammatory markers. Having an
| autoimmune disorder increases your likelihood of being
| diagnosed with depression and vice-versa. There is no clear
| boundary between the biological and the psychological; emotion
| and cognition are biological processes in exactly the same way
| as digestion or respiration.
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9540243/
|
| https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2020.2...
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5338810/
| nomel wrote:
| My mom had this, fairly severely. As with many others, most
| doctors (and even family members) said it wasn't real, was in her
| head, etc.
|
| Then, after around two decades, it just all went away. But, in
| its place were some new, odd, allergies. My theory is that her
| immune system was perturbed in some significant way, which caused
| whatever was causing the CFS to be dealt with/managed. Who knows.
|
| Seeing the doctors call her a liar, to her face, really knocked
| doctors off the pedestal that society lead me to believe they
| were on.
| agumonkey wrote:
| some doctors really think too high of their education. very
| detrimental for everybody with strange conditions
| jobs_throwaway wrote:
| The modern process to become a doctor 1) selects for
| incredibly obedient, follow-the-rules type individuals and 2)
| implicitly and explicitly enforces those norms.
|
| If becoming a professional programmer required 4 years of
| grade grubbing in undergrad, 4 hellacious years of graduate
| school, then 4+ more years as a resident, and once you
| started working your customers could sue you every time they
| encountered a bug you wrote, I bet you we would see similar
| risk aversion/coherence to accepted wisdom in the profession
| that we do in medicine.
| mattgreenrocks wrote:
| Yep. And doctors often seem to have zero interest in
| something that doesn't fit their models well.
| onlyrealcuzzo wrote:
| Why, Margaret, assume you're a spherical cow and take
| these brown pills twice daily.
|
| You'll be just as new in a jiffy.
| agumonkey wrote:
| Oh I'm not asking risks off of them, I somehow respect
| their effort and responsabilities, just a more neutral
| point of view. They're judgement can lead to long term
| damage too if they refuse to take your story into account.
|
| A simple "you don't fit the standard grid, maybe there's
| something else, personally I can't help you, keep digging."
| s1artibartfast wrote:
| I think there is more to it than that. The process also
| selects for people who are very hard working and trains
| them to think in terms of averages.
|
| Everyone wants an unconventional doctor when the convention
| isnt working for them, but that doesn't mean people on
| average would be better off if doctors didn't follow
| convention.
|
| The desire for a doctor that bucks the rules breaks down
| once you understand that they aren't super-human problem
| solvers (as seen on TV).
|
| Even listening to and believing patients becomes an
| optimization problem.
| jordanpg wrote:
| I also have a mom who has/had this.
|
| It started as fibromyalgia. Then it was multiple chemical
| sensitivity. Then it was chronic fatigue syndrome. Then it was
| a autoimmune disorder. Most recently it is an exotic form of
| lupus with extreme photosensitivity.
|
| Each time, like you said, it just went away but was replaced by
| the next thing.
|
| I don't have any doubt that my mom's subjective health
| experience is real and unpleasant, but after 30 years of this,
| I do have my doubts about a physiological etiology.
|
| The peace I've had to make is that even if it is "in her head,"
| the pain is real.
| tasty_freeze wrote:
| > I do have my doubts about a physiological etiology.
|
| I hope whatever is afflicting your mom gets sorted out, but
| please don't generalize your N=1 experience of your mom to
| the entire population of ME/CFS sufferers. It only breeds
| contempt for the condition.
|
| As a N=1 counter example to yours, my wife has suffered from
| it for 20 years and she is still suffering from it, with the
| same hallmarks the entire time. She also suffers from EDS
| (Ehlers Danlos Syndrome), which actually came first.
| Statistically, people with EDS are far more likely to have
| ME/CFS. If ME/CFS doesn't have a physiological basis, how
| would explain this -- perhaps that people with EDS tend to
| develop the same health delusion?
| jdietrich wrote:
| _> please don't generalize your N=1 experience of your mom
| to the entire population of ME/CFS sufferers. It only
| breeds contempt for the condition._
|
| If suggesting that ME/CFS may be a mental illness breeds
| contempt towards sufferers, then we really need to reflect
| on our attitudes towards mental illness. The aetiology of
| ME/CFS should have absolutely no bearing on how we regard
| people suffering from it. Mental illness is real illness.
| freedomben wrote:
| > _If suggesting that ME /CFS may be a mental illness
| breeds contempt towards sufferers, then we really need to
| reflect on our attitudes towards mental illness._
|
| Absolutely you are correct on this, but at the same time
| it doesn't change the reality that to many people and
| doctors, ascribing it to mental illness is essentially a
| dismissal, which is wildly unhelpful to the person
| suffering.
| Aaronstotle wrote:
| My sister is similar, she has fibromyalgia and now she has
| another condition which no one in my family quite knows, and
| neither do the doctors. It hasn't been 30 years for me, but I
| do hope that some doctor can figure it out.
| boringuser2 wrote:
| So you ignored a bunch of doctors and feel vindicated?
|
| Doesn't pass the sniff test.
|
| Don't ignore doctors, people.
|
| That said, mental illness can be very debilitating and is very
| real.
| kazinator wrote:
| The doctors were denying the existence of an illness though.
|
| Don't ignore the doctors when they diagnose you with an
| illness.
|
| If they insist you don't, there is a risk in not ignoring
| them. Maybe you have something and their diagnosis missed it.
|
| (I do realize that from the grandparent comment, we cannot
| conclude that the doctors were proven wrong. The symptoms
| went away on their own, and were never diagnosed as being
| something physiological, which would contradict the "in your
| head" claim.)
| protocolture wrote:
| No the doctors ignored her, big difference.
| com2kid wrote:
| I had a doctor tell me my knee pain was because I had worn
| away the cartilage and it was just going to hurt for the rest
| of my life.
|
| I had a personal trainer tell me it was because the muscles
| on one side of my leg were much larger than the other (leg
| length difference) and that was pulling my kneecap out of
| place.
|
| The personal trainer was correct, a few months of focused
| single leg exercises and the knee pain that had been with me
| for years went away.
|
| Doctors don't know everything.
| tayo42 wrote:
| How did they determine there was an issue with cartlidge in
| the first place
|
| Ime, I've had frustrating experiences with doctors about
| physical stuff like that.
| s1artibartfast wrote:
| Doctors are human and medicine isn't mathematics.
|
| Putting the words "I think" before everything they say
| makes expectations a lot more realistic.
| bongodongobob wrote:
| Was this after running tests that turned up nothing or did they
| just say "no, we don't believe you" from the start?
| freedomben wrote:
| I'm not GP but had similar experience, and yes they run every
| test they think is "reasonable" (i.e. insurance will approve)
| given the symptoms.
|
| Problem is it's a game of finding statistical outliers, and
| often these types of conditions cause only subtle changes to
| conditions. Mix with the problem that the statistical ranges
| are based on what labs are seeing in tests, but for some of
| the tests people usually only get them when they are having
| symptoms, which artifically pushes the outlying bands even
| further out so that "normal" includes a chunk of people that
| have the condition!
|
| And then even if they do find stuff, it's usually all about
| treating the symptoms and not the causes. Except nowadays
| only certain symptoms because we've decided that the small
| percentage of people who abuse some pharmaceuticals are a
| good enough reason to err on the side of denial to a
| legitimate person rather than granting to an illegitimate
| person. In no small part thanks to a DEA who will clap a
| well-meaning doctor in irons if they give t someone who
| shouldn't, but there's no penalty at all for withholding from
| someone who needs. It's no surprise which side they would
| rather err on and bet their medical license/livelihood on.
| pwthornton wrote:
| The allergies angle is interesting. I am doing allergy
| immunotherapy shots right now, and the first few weeks of doing
| them, I had the worst fatigue of my life. I just had no energy
| and low desire to do things. Once my immune system adjusted,
| the shots got a lot easier each week.
| kazinator wrote:
| > _Then, after around two decades, it just all went away._
|
| That doesn't confirm that the doctors who said it was all in
| her head were wrong.
| tick_tock_tick wrote:
| Why especially with
|
| > Then, after around two decades, it just all went away.
|
| are you ruling out it being psychosomatic? It "being all in her
| head" doesn't mean she isn't chronically fatigued just that the
| cause is in her head.
| simcop2387 wrote:
| It's stuff like this that makes me wonder a lot about the
| studies happening around chronic inflammation and things like
| that too. I won't be surprised if a lot of chronic illnesses
| end up turning up as auto-immune and gut/body-biome issues
| where something has gone awry and now there's too much of
| something happening.
|
| Things like EBV staying around for long periods of time at low
| levels is one of the purposed causes of CFS symptoms, among
| others, in a lot of people, given it's prevalence.
| https://en.wikipedia.org/wiki/Epstein%E2%80%93Barr_virus#Rol...
|
| I also won't be shocked to find that CFS turns out to be just
| common symptoms of dozens of diseases/syndromes that are all
| different and we just suck at identifying them right now.
| That'd also help explain why it's so hard to nail down and
| treat.
| btbuildem wrote:
| ME/CFS sufferers have been pushed to the fringes and gaslit for
| decades. It's reassuring to see studies that validate these
| conditions and try to find some answers instead of outright
| dismissing it.
|
| I wonder if the ever-growing cohort of Long Covid sufferers are
| making this a problem that can no longer be ignored.
| fragmede wrote:
| Undoubtedly. Especially, and unfortunately, since doctors and
| nurses, along with young, previously healthy, active people,
| came down with CFS after catching Covid, where walking to the
| kitchen is too much work, watching Netflix is too much work,
| makes it clear there's a malady that can be cured since these
| people were previously healthy.
| MyFirstSass wrote:
| I've had this for some years but it seems to be getting a bit
| better for some unknown reason.
|
| The worst part is not the fatigue but the PEM, or post exertional
| malaise.
|
| Took me years to figure out my lifting made me feel like absolute
| garbage, almost suicidal if i went hard enough, but not right
| after, felt great the following day, but then, super crash and
| extreme doom and gloom 48 hours afterwards, so unfair and
| bizarre.
|
| These days i workout in moderation. Such a weird condition, and i
| would love to know what goes on chemically as it feels very, very
| physical, like some hormone/mineral or whatever suddenly runs out
| and.
|
| Tried all kinds of supplements but have a feeling it's related to
| the gut biome, inflammation levels and general stress / cortisol
| also pseudo scientifically known as adrenal fatigue.
| vimy wrote:
| If you have too much inflammation and if you have a stressor
| that causes cortisol to go up, like lifting, the conversion of
| T4 to T3 may be disrupted and you have too much reverse T3
| instead. This causes hypothyroidism two days later.
|
| Easy test is to take T3 (liothyronine sodium) on such a day.
| See if you feel better.
|
| https://pubmed.ncbi.nlm.nih.gov/8895357/
| mattgreenrocks wrote:
| Thanks for writing this. I'm sorry you have to deal with it. I
| have something similar: once I lift hard enough when
| [re-]starting lifting, I get a big emotional hangover the next
| day or so as well. Feels like a truck hit me, basically. No
| amount of food, hydration, sleep, or anything stops it.
|
| It might be comorbid with my hypermobility, but who knows. I
| basically expect it to happen at this point and just plan to
| lay low for 48 hrs.
| freedomben wrote:
| I have this pretty bad, to the point where even climbing a few
| flights of stairs will leave me wasted and feeling like utter
| shit. It's taken 15 years and 10s of thousands of dollars (with
| insurance) to figure out that I have Hashimoto's. The
| treatments can help a little bit, but not much, and no doctor
| can tell me why. I've read a few books that give some plausible
| sounding examples, but anytime I've mentioned these to doctors
| they are dismissive yet can offer zero explanations themselves.
| There are no shortage of chiropractors and functional medicine
| practitioners that have very plausible sounding explanations,
| but no real solutions (I've tried every type of diet-based
| advice I could and it can sometimes feel like things are
| improving a little bit, but the super hard diets are not
| sustainable. I've restricted gluten and dairy as those are the
| two most suggested things that enflame, and I definitely feel
| better without those things, but it's really, really hard to
| eat like they tell you too unless you have a personal chef).
|
| If you are having similar, try completely cutting caffeine for
| a little while. It can be extremely hard when you're already
| fatigued, but it is like gasoline on the fire for me now.
| rednerrus wrote:
| Have you had your kidneys tested? This sounds incredibly
| similar to kidney disease.
| anonymous344 wrote:
| If it's not any other more-regular ones like the article states,
| could it be one of these - sensitivity to electromagnetic
| radiation (if it's even possible) - lack of minerals - gut
| problem -> brain problem - too much sugar or insulin in the blood
|
| of course normal doctors don't even think of these things because
| "food cannot make you sick, and pills or knife are the only
| solutions to any problems"
|
| If you have these symptomps, i'd suggest -intermediate fast -fast
| - consume seasalt water, most raw quality sea salt (unwhitened
| etc.) and most clean water from the spring or filtered - then
| also, high-quality oils. Brain needs oils and our current food
| contains almost 0 of them. Even lax are fed with soy and other
| awful stuff
| Eric_WVGG wrote:
| I've been following a project called Remission Biome on Twitter,
| sort of crowd-sourced self-experiments run by a pair of doctors
| who have ME/CFS.
|
| https://twitter.com/remissionbiome
|
| One of their projects I find interesting is the use of nicotine
| patches to self-regulate. "Nicotine activates AMPK, the substance
| that tells your body (Mitos) to produce ATP. Without ATP, no
| energy. Also muscles cannot complete contraction 'cycle'. Ensuing
| stiffness and fatigue. Inflammation is one way AMPK gets
| deactivated." IANAD, but inflammation seems like a persistent
| theme in a lot of modern, chronic conditions.
|
| https://linktr.ee/thenicotinetest
| tomhoward wrote:
| I've largely overcome CFS with a variety of treatments over more
| than about 15 years. Most of the treatments are physical
| therapies (particular nutrition and exercise approaches), but an
| unconventional subconscious emotional healing modality has been
| fundamentally important. After a few years of doing just physical
| treatments, things only really started to change once I tried the
| emotional healing approach, which only happened by chance when a
| physical therapist said "maybe this will help"; I didn't go
| looking for it as I was so focused on the physiological symptoms
| (pain, inflammation, weakness/exhaustion), and
| psychologists/psychiatrists I'd seen before said I seemed fine
| enough.
|
| So, yes, the treatment that worked for me is unconventional. I
| mean of course it's going to be unconventional: as this article
| reminds us yet again, the medical establishment has been trying
| to explain (or dismiss) this condition for decades by adhering to
| conventional understandings of health and getting nowhere. So an
| approach that currently seems unconventional is the only way
| there can ever be any headway with this issue.
|
| I've long said I would like to be involved in research into the
| condition and into the treatments I've found beneficial. Any
| researchers who want to talk to me, or anybody interested in
| supporting or being involved in this kind of research is welcome
| to contact me.
|
| As this article reaffirms, CFS/ME advocates frequently insist
| that the condition must be taken seriously because it is
| fundamentally a physically-rooted condition; as if (a)
| emotions/traumas can't cause or exacerbate physical symptoms, or
| (b) that conditions that are rooted in emotions and trauma should
| be taken any less seriously than those that are primarily
| physical. Of course both these positions are plainly false.
|
| The real problem is that mainstream medicine just doesn't give
| much credence to the notion that emotions and physical symptoms
| can be deeply connected. (And to be clear I come from a
| background of strict acceptance of scientific and medical
| orthodoxy).
| polishdude20 wrote:
| Can you go into more detail on the emotional healing approach?
| fellowmartian wrote:
| Did you ever come across low dose naltrexone?
| John23832 wrote:
| Long story short (and TMI), I had an STD (Mgen) that went
| undiagnosed for (what I think was) multiple years. It's basically
| not tested for ever. I personally had no symptoms other than
| being highly fatigued randomly to long periods of time. I tested
| positive on a panel with a urologist during a visit for something
| totally different, totally boring. I was given specific
| antibiotics (you need more than doxy for this one) and my fatigue
| never came back. To this day, I think all of my symptoms were by
| body fighting this bacteria.
|
| At first I was pissed at all the doctors who told me it was just
| in my head. There was nothing wrong with me. But in the end, I
| came to the conclusion that they just didn't know. Which is a
| reality... There's just so much we don't know about the human
| body.
| fellowmartian wrote:
| No claim on whether it's true (as I have no idea), but there's
| something called RCCX theory that tries to explain this and many
| other autoimmune diseases.
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