I was always suspicious it was something else, as it started when I was diagnosed with type 1 diabetes at age 5. I was constantly scavenging the medical literature when I was in college.
At age 22, it got out of control and I was in and out of the hospital. I came across a journal article and I realized that there was nothing about this disease that could eliminate it as a possibility. I knew I was screwed.
My blood was sent to the only lab in the US that tests for it. It came back positive.
Now, in the past year, at age 30, after trying about 10 treatments, including in combinations, I am finally in remission.
I am back in school finishing my electrical engineering degree. I am a senior undergrad. I have a new lease on life. I never thought I would be doing this well!
EDIT: My diagnosis story is here. But, I was not doing as well as I am doing now, when I posted it: https://rareandextraordinarycom.wordpress.com/2016/05/14/fir...
By the time you are diagnosed with type 1 diabetes, around 90% or so of the islet cells (insulin producing cells) are eradicated, supposedly.
https://www.statnews.com/2019/07/25/ai-expert-writing-code-s...
This is incorrect. norADRENALINE is a more specific version of ADRENALINE made in different parts of the body (and which also acts as a neurotransmitter). outside of nerves, noradrenaline acts on alpha receptors which among other things constrict blood vessels to raise blood pressure (it is used for this in critically ill patients). adrenaline acts on the same alpha receptors, but also targets beta-receptors which have the effect of speeding up and increasing the strength of contractions in the heart (also used in critically ill patients with low blood pressures and whose hearts aren't pumping enough). Epinephrine is another word for adrenaline.
> As Lindsay delved into more medical literature, he found only 32 recorded cases of bilateral adrenal medullary hyperplasia.
I don't have numbers to counter this off the top of my head, but congenital adrenal hyperplasia is a rare syndrome, but still common enough that it is taught to every medical student and tested on our boards repeatedly.
obviously, im somewhat skeptical, but i guess that plays into his hands since I'm part of the 'establishment'. Hard to know without more medical details, which are glaringly missing from any stories I can find about him...
I just kept trying different doctors until an intern assistant to one of them saw the actual issue and got me referred to an awesome specialist who confirmed the diagnosis (and found the other problems I had not known about yet) and got me to a surgeon who did surgery to fix it. As a result of this, I strongly distrust doctors and I think they can sense that when I see them.
For those more curious, I had Idiopathic Intracranial Hypertension as I am rather large. Due to being large and doctors being able to see that problem, they just assumed it was the issue and they never looked at anything else. They put me on NASTY drugs to fix the issue, but my eye sight just kept getting worse. I have no idea why it took an intern to see the problem, but in the end I had ABMD (also known as Map-Dot-Fingerprint Dystrophy). I believe a total of 6 eye doctors and two neurologists completely missed it. I really should have gotten the intern's name and properly thanked him, as who knows how much longer I would have had to go without a diagnosis. IIH can cause blindness, as it will slowly destroy your vision (or in some cases quickly), so I kinda understand why they may not have seen it, but from what I have read, it sounds like ABMD is pretty easy to see if you look for it, and none of the real doctors did.
So I hope no one out there ever has multiple problems causing similar symptoms, because doctors can't be bothered to think about that possibility, at least eye doctors.
Michael J Fox helps cures Parkinson’s:
Augie Nieto with ALS:
[1] https://news.ycombinator.com/item?id=11334660 [2] https://en.wikipedia.org/wiki/Leo_Szilard#Cancer_diagnosis_a...
I had kidney pain, chest pain, migraines, felt sick constantly, fatigued... I look after myself. I run, rock climb, eat ok, not overweight. The doctor was very worried, gave me anti-sickness tablets as a first thought, ordered every single test imaginable.
It was just stress, I didn’t think work was doing that to me.
Had some conversations with HR, top management listened, unrealistic dates shifted. I got better almost overnight.
I’ve read a number of comments here that possibly could be the same, so I hope this helps somebody.
A former RN told me that adrenal and thyroid issues are interrelated. That was useful information for me.
I'm a bit surprised and taken aback that the article kind of implies that many medical practitioners aren't aware that thyroid and adrenal issues can be similar or connected.
It's interesting to see the parallels between his story and the story of others who became entrepreneurs. I see so many stories of entrepreneurs finding a problem with their life or in the world and then fixing it. This guy took it to the extreme and managed to fix a medical alignment within himself all while bedridden.
This applies to almost any health problem you might encounter in the US. It's rare to find a doctor who actually cares and even more rare to find one that will dig deep to help you.
One of the greatest lies ever told is that you can trust your doctor and that there isn't more you can do if the doctor says so.
Last year I was suffering through a bout of strange fatigue that came about right after a mysterious throat infection. There were days I could barely go up the stairs without being winded or without assistance. I googled around and started reading about Chronic Fatigue Syndrome (CFS) and found this large, shadow community of millions of sufferers. Many of these people have had these symptoms for years, and when they go to the doctor they are simply told "It's all in your head," and if lucky, they'll run some tests and prescribe something that gives them temporary relief.
I asked my cousin who is a doctor about his opinion on CFS, and he told me it was difficult to diagnose and even harder to treat. The most they will do is refer you to a specialist or even psychiatrist.
After a couple months my fatigue went away on its own. But I did find that creatine helped. And this has been backed by others in the CFS community who have stated that eating raw meat relieves their symptoms (natural creatine in meat is destroyed once cooked). But a doctor would never tell me that, because if there isn't conclusive proof from a medical journal and/or a big pharma drug to prescribe, they are either too afraid or unwilling to say anything.
I find it puzzling that so many people's first (and often only) reaction to health problems is "see what the doctor says," never granting themselves agency or permission to conclude they're actually sick or try a treatment that someone else didn't recommend.
Maybe "Student was bedridden for 11 years..." would be more accurate.
It is a good story. Just a bad headline.
In the news where I'm at, if a 19 year old does something good, they refer to him/her as a "Teenager."
If this same 19 year old does something bad, "MAN ARRESTED FOR..."
Never understood it.
"Teenage Pregnancy", for example. Most folks picture someone young. 15-16, perhaps. Most folks don't stop to consider that a very sizable portion of "teenage pregnancy" happens to 18 and 19 year olds, which while young isn't that uncommon either.
> If he could cut out the medullas of his adrenal glands -- sort of like slicing into a hard-boiled egg and removing the yolk -- his health would improve.
> Eventually he recruited a surgeon from the University of Alabama-Birmingham. In September 2010 Lindsday went to the university hospital, where the doctor successfully extracted one of his adrenal medullas.
> Three weeks after the procedure, Lindsay could sit upright for three hours. By Christmas Eve, he had the strength to walk a mile to church.
> But progress was slow. In 2012, he underwent a second surgery at Washington University in St. Louis to remove the medulla from his remaining adrenal gland.
> A year later, he was well enough to fly with friends to the Bahamas. It was the first time in his life the Midwesterner had seen the ocean.
I also cherish summaries like these - if I read the whole article I won't remember more than 2 sentences of it tomorrow. That distillation process is inevitable and good. It's a service to do it well for those who are time/memory-limited.
I can often understand what the article is about and go to the comment section for pros and cons
Article from his experience before surgery in 2010 -
https://www.riverfronttimes.com/stlouis/is-there-a-doctor-in...
I've also had an experience where I basically told the doctor
>I am tired all the time, I sleep 12-16 hours a day and still wake up feeling completely unrested, and it seriously affects my ability to do my school work and live my life
and his response was (to paraphrase)
>you just need exercise, fatty
For context, I was in my late teens at this point, and a few pounds overweight by the medical definition.
Long story short, after many expensive visits with psychiatrists, we learn that anti-depressants didn't help because I wasn't depressed.
I finally did a sleep study, and it was sleep apnea. A sleep disorder.
This sounds ridiculous, right? As an outsider looking in, it's so obvious. But this actually happened to me, and I am sure it happens to thousands of patients all of the time.
You are confusing Congenital adrenal hyperplasia (ie 21 alpha hydroxylase deficiency), the bane of every 3rd year med student and adrenal medullary hyperplasia, a much rarer condition (I don’t recall it ever coming up during medical school).
Congenital Adrenal hyperplasia involves the cortex where the corticosteroids are produced. Epinephrine and norepinephrine are catecholamines produced by the medulla. AMH is more similar to pheochromocytoma though.
Why distrust doctors when it was a doctor (in training) that discovered it, and it took other doctors to treat it?
Uncommon things are a blind spot for most medicine, just like they are in other fields as well. For example, in CS rarely do we ever expect a compiler or OS or libc bug, but they do happen.
I have had other issues where doctors thought I was lying to them, although no others that ended up with any serious consequences, just having to go see someone else.
I also had a doctor recommend dangerous surgery for a condition I ended up not having. Which, yes, getting a second opinion is good, but had I not done that, I would have had major surgery on my head that has a roughly 10% chance to deafen you for life.
I have the misfortune of having multiple rare issues (on more than just my eyes) and as a result, dealing with western medicine sucks.
My father has similar issues, so I have seen it with him too. For example, doctors let his appendix explode inside of him after he went into ER twice complaining of extreme pain in his abdomen. It exploded a few hours into the second visit and he almost died.
The person in the story got referred to psychiatry because medicine didn't believe him.
Similarily, many legit medical disorders are discounted as not real symptoms by western medicine until decades later, for example, lyme disease, which is caused by a real organism with a real transmission pathway (ticks), with repeatable symptoms, but was discounted for years as "patients just making things up".
I had a urinary tract infection that I felt progress up to my bladder and eventually into one kidney and then the next. I would’ve liked to visit a doctor immediately, but with American medical costs being what they are and hospitals advising me to hold out a few more days until a doctor in my insurance network was available, I’d hoped that small stinging pain down there would go away. But nope, it spread to all the regions mentioned plus I was passing blood almost nonstop. I couldn’t sleep, could barely walk, and felt like I was on the verge of dying.
I made it to a doctor once I knew it was a life or death situation, described my symptoms and the progression, and the guy starts digging into me, trying to say I’m just fishing for antibiotics (what?) and it’s clearly a kidney stone. I all but called him a dumbass, because it wouldn’t make sense for a kidney stone to move backwards up to both of my kidneys. I had to wait around for a urine test to prove that yes, it was in fact an obvious kidney infection, but the doctor was still skeptical asserting that it’s probably just a mild kidney stone, and reluctantly gave my antibiotics that cleared it up instantly.
That wasn’t the first time a doctor tried to argue against my obvious problem (I also had one argue that I didn’t break a clearly broken bone), but it was the most frustrating experience.
Note: she was a head nurse and the textbook definition of "walk it off".
It's story after story about people asking for help, doctors telling them to "Just go home and wait a while and see what happens," until the person figures out the problem themselves and struggles to find a doctor that believes them.
Are non-"western" healthcare practitioners exempt from biases and prejudicial opinions?
I think it's fair to say that, like all humans, healthcare practitioners may have prejudicial opinions on healthcare matters that can lead to erroneous diagnoses. The western ones don't have a monopoly on this behavior.
Out here in the west...people will roll in with some obvious diagnosis and some overworked urgent care doc seeing 60 patients a day wouldn't have bothered to ordered even the most basic tests....
I have some experience with this topic, having spent at least 13 years in that category of people who is ill in a way that mainstream medicine can't really diagnose or treat - and in a way that has parallels with the symptoms described in this article (though not nearly as severe or debilitating).
The idea of "adrenal fatigue" and "adrenal insufficiency" has come up a lot in the self-directed research I've done, but only among complementary/alternative practitioners like naturopaths and chiropractors.
It's not really a medical way of thinking about things - i.e., "your adrenal glands must be tired because you've been too busy/stressed". It's not something you can test for or address with medical treatment - which is why people who go down that path end up undertaking 'holistic' treatment approaches like diet, supplements, exercise, emotion-based therapies, etc, with varying degrees of success.
But there are plenty of people I've come across, particularly in communities of people who diagnosed with, or presumed as having "Chronic Fatigue Syndrome", who suffer without any improvement for many years despite trying every conceivable remedy, whose condition may well be explained by what is described in this article, or by something comparably obscure, relating to the adrenals or other parts of the autonomic nervous system.
About 5 years ago I was fairly healthy, eating great and CrossFit 6 days a week. Then my body started to become tired all the time. I had pretty high work stress at the time along with what might be considered frequent physically stressful workouts. I suddenly found myself sleeping most of my Saturday and Sundays. Struggling during the week, just enough energy to get myself to work and back to crash at night. Eventually dropping exercise altogether. Along the way I started feeling weak, shaky and would have almost tremors in my body. I had read about adrenal stress at the time and suspected it might be an issue.
It’s hard to tell what’s related but I eventually developed prostatitis, a few rounds of cipro and no help. Then almost a year later some pretty severe digestive issues developed and they thought I had Crohn’s disease, then hospitalized due to reaction to medicine. Then kidney stones, gallstones, gallbladder removed. The last few years have been hard but so many people have it worse.
After the gallbladder removal I’ve finally starting to feel meaningfully better, digestive significantly better and prostatitis issues resolved.
I don’t work out like I used to, I’ve had times that I try to get into a running regime but eventually I start to feel sick and pain around my kidneys. I’m able to do extended hours of yard work and be outside for long hours. I’m lucky that my health appears to be coming back. I have no idea the ultimate root cause of all this but I’m counting my blessings.
When I read about stories like this, it’s inspiring and relatable. When doctors and specialists can’t figure it out they send you to someone else or suggest psychiatric issues. It’s disheartening and easy to lose faith in the medical system.
What he has is "bilateral adrenal medullary hyperplasia. In layman's terms, it means the medullas, or inner regions, of his adrenal glands were enlarged and acting like tumors. His adrenal glands were producing way too much adrenaline."
To casually dismiss a person’s symptoms as all in their head is just as dangerous as trying to treat their symptoms with alt-med hocus pocus.
Speaking as someone who has been in a comparable (though not nearly as severe) predicament to Lindsay's for several years, I'm more sympathetic to the experts.
Medical science is incredibly vast and complex, and is limited by external constraints like research funding, insurance, the political/social climate, and many other factors.
There is a limit to how much attention the practitioners and researchers can devote to any topic, and they have to focus on what will generate the greatest overall benefits whilst keeping themselves in a living.
And for every "tip of the iceberg" Doug Lindsay who figures out a valid diagnosis and treatment, there are countless time-wasters.
I've been one of the time-wasters in the past, and it'd be nice to think that after the many years of research and experimentation I've done, I’m closer to being a bit like Lindsay (though fortunately I won't be needing to find someone to slice my adrenals open, thanks!).
There could well be a place for a system that makes it easier for people like Lindsay to be heard and taken seriously. Surely there are many others who have made similar breakthroughs in understanding their own illness, but who aren't able to talk their way into medical conferences and present well enough to be listened to.
But let's not be too harsh on the experts, at least in the medical profession. It's a pretty challenging and thankless business for them, much of the time.
If your take is "experts are rubbish" then you have fundamentally missed the point.
Different types of expertise are valid and important, and different people have different motivations for what they do and how they do it.
The key point of this article is that someone who started out as a non-expert, was motivated by his own need to overcome an illness that established experts couldn't diagnose or treat, because they didn't share his predicament.
Let's just try to appreciate that for what it is.
Yes, but it's also amazing how kooky, dangerous, delusional non-experts that think they know better can be -- so their close-mindness is part of an attempt to balance that.
Just two examples that millions of people believe in: perpetual motion machines and homeopathic drugs...
And from The Bullshit Principle (https://statmodeling.stat.columbia.edu/2019/01/28/bullshit-a...): the amount of energy needed to refute bullshit is an order of magnitude bigger than to produce it. As a natural result, if everything from outsiders are taken seriously, wasting 99% of time is guaranteed, so experts are trained to ignore them. Ignoring authentic insight is an unfortunately consequence, but I fail to see how the problem can be solved.
Also, the issue of expert vs. non-expert and insiders vs. outsiders are different. You can be an outsider who rejects established technical dogmas or institutional power structure, while still being an expert in terms of knowledge (although whether someone is being recognized as an expert is a social-political question, but let's idealize), and you're very likely to be rejected from the academia, however, on the other hand, the combination of "non-expert" + "outsider" makes people don't even take you seriously.
The last thing the world needs, however, is more armchair experts declaring that their opinion is greater than someone else’s knowledge. That, after all, is how we’ve ended up with anti vaxxers, a resurgence in largely cured infectious diseases, and many other medical and social ailments of our modern age (politics anyone?)
Medicine is great when it works, but sometimes it causes the diseases they supposedly treat.
Psychiatry is a case study in ideological capture resulting in iatrogenic illness. My girlfriend was misdiagnosed, but since they use the courts to force her to take the drugs that actually make people suicidal (common result of anti-psychotics) and die of liver failure (my aunt's friend), there's no way for her to escape.
The tragedy of Psychiatry is that the physiology of the conditions are largely understood, but this understanding didn't reach the practitioners working with patients.
People are drawn to "alternative medicine" when their mainstream medicine practitioners shrug their shoulders. In the United States, standard insurance-based medicine is a wealth-transfer operation: it's fantastically expensive approach to rendering needed services.
Now I see there are many comments about the content of the article. I don't know if the summary caused more people to read it or not. I wanted to encourage more readership and on-topic discussion.
They easily discard patients' subjective experience. Recent research is calling for a change in that aspect, and change is slowly happening.
I agree that people are drawn to alternative medicine when they can’t get answers from doctors. And I am a vocal advocate both inside and outside of medicine for the failings of the system. For example, if I turn up to the GPS office and sit in a room of sick kids with paint peeling off the walls to be seen by a disinterested doctor for 15 minutes who sends me away without giving me a deifinitive answer to my questions/concerns; then later go to an alt-Med quack with a water fountain in the waiting room, incense burning and she spends 45 minutes with me listening to my problems, who am I going to come back to, especially if I derive benefit (there are studies showing that practitioner engagement and active listening are for many common ‘modern’ presentations highly effective)
Part of this is the modern world has produced people who are so healthy and generally well off compared to our forebears that the moment they develop an ache or pain they fear the sky is falling and demand an answer.
And medicine doesn’t have answers, or maybe not the answer these people want, because most of these things are just the process of growing old in and of itself - people are externalising their existential angst on a system that was designed to treat sick people, not the walking well.
For example, of the 17 patients I treated in the emergency department on my last 2 shifts, 9 of them should have never even turned up to the department. They had nothing wrong with them, or nothing that staying at home, resting and using some common sense wouldn’t have fixed. Yet there they are demanding answers to questions that our forebears would have considered part of life; and which in any regard we can’t fix anyway.
I don’t work in the US but the system there is so fucked that I wonder how long until it contributes to a broader breakdown in society; healthcare is a basic human right and you’re right the wealth transfer aspect of it is disenhartening and concerning.
Psychology is kind of a special case, since there's often no physical evidence of the condition. You're just going by what you see and hear from the patient. Add to that the replication crisis, which is especially bad in the field of psychology, and you'll get a lot of things you think are proven but really aren't. And of course then there's the added issue of the justice system in your case. While already being punitive in general, they also use forced therapy and institutionalization as a punitive measure rather than a protective one used only in emergencies. Other fields of medicine don't have these problems (except for the replication crisis to some extent).
> The tragedy of Psychiatry is that the physiology of the conditions are largely understood, but this understanding didn't reach the practitioners working with patients.
That's also one of the problems. Practitioners aren't required to keep up with new research (maybe in some jurisdictions they are? I'd be interested to know), so many work on obsolete knowledge. I'd assume that many very specialized doctors like brain surgeons do keep up somewhat, but GPs most likely don't. It probably depends on their workplace as well. This one is common to all fields of medicine.
> Medicine is great when it works, but sometimes it causes the diseases they supposedly treat.
I'd say that's usually not the case (i.e. vaccines won't give you the disease they should protect you from), but psychology is special once again. With psychotherapy, patients can feel pretty vulnerable, and a bad therapist can make things worse by exacerbating existing mental disorders or even inducing new ones. Psychiatry works with lots of double-edged medications. A good psychiatrist will work with their patients to find the right medication and dosage, but a bad therapist may just prescribe whatever they think is right and disregard the patients opinions.
From someone rolling with a crippling disability.
https://www.mayoclinic.org/diseases-conditions/lyme-disease/...
Once your out of stuff you can think to test for modern medicine doesn’t start throwing tests at the wall to see what sticks... it shrugs its shoulders and gives up.
Now sometimes this is good (hypochondria + psychosomatic problems) but sometimes this is bad... failure to get a diagnosis due to skipping something they didn’t think of.
This is why I always tell people who are unsatisfied with the handling of their medical problems to get a second opinion, a third opinion, as many opinions as it takes. If your doctor says they don’t know why something hurts... ask another one. At some point you should press for referring to a specialist... even if it’s a damn psychiatric specialist because they think it’s in your head... when they check you’re not crazy, that’s one less excuse they have for ignoring your problems.
That’s what this person did here. Eventually the only opinions left were the ones they had to dig up on their own. Sometimes this path even involves researching new (or old/forgotten/misunderstood) but at the end of the day this is how hard it is to understand how the body actually works.
It’s one of the reasons I’m so thankful for my reasonably good health. There’s a nearly infinite number of ways the body can be broken or damaged, the fact is we only understand a small part of the most common things that go wrong and can fix an even smaller number of the things we do understand.
Edit to pre-empt criticism of affordability of this approach: I live in Australia where we have public healthcare so everyone can see a doctor (or twelve) without being driven into bankruptcy.
He was able to improve his condition by being on a permenant norad infusion, which is something we only do in hospitals to critically ill patients who are having a hard time keeping their blood pressure in any normal range. Generally, norad is a shorter acting version of adrenaline that acts on a slightly different hierarchy of the same receptors. If it was as simple as ‘too much’ adrenaline, I suspect some benefit effect would have been seen by beta blockers. Maybe there is, maybe that’s one of the 9 medications he takes every day.
Worth noting also that a condition that dumps way too much adrenaline into the body, phaeochromocytoma, is often an incidental finding; so this obviously presents differently despite having (simplistically, from the article) the same type of mechanism.
We don’t have all the information we need to make inferences from this particular article
Edit: here’s more on the subject https://www.health.harvard.edu/blog/a-checkup-for-the-checku...
Some years back in London I fell ill with constant high fever. Following the protocol, I took paracetamol for 5 days but my condition worsened.
So I checked into the hospital. It is considered a decent NHS hospital. They promptly took blood samples and put me in isolation suspecting some infection. But despite being reporting that paracetamol is not helping they kept giving out to me religiously for 10 more days. Everyday they would collect blood samples and assure me that they are going to find the root cause and then start the proper medication.
After 15 days of constant 40C fever, they still don't wanted to treat me. On 16 day, barely conscious almost naked in ill fitting hospital gown I walked out of my room and screamed and probably abused the staff and collapsed on the floor.
Then only they have me broad spectrum antibiotics and in next few days I was back home.
At that time I researched that it is common protocol to administer broad spectrum Antibiotic if diagnosis is non conclusive.
I still wonder what would have hapenned if I hadn't taken it to the floor on 16th day.
https://www.vox.com/policy-and-politics/2018/1/29/16906558/a...
>His company uses Anthem, one of the country’s largest health insurance plans. In recent years, Anthem has begun denying coverage for emergency room visits that it deems “inappropriate” because they aren’t, in the insurance plan’s view, true emergencies.
>The problem: These denials are made after patients visit the ER, sometimes based on the diagnosis after seeing a doctor, not on the symptoms that sent them, like in Cloyd’s case.
When doctors get it wrong, people die. Anyone who genuinely does care about human suffering is going to find that difficult.
But a lot of patients are idiots too. For every educated more-or-less self-aware middle class professional a doctor sees, there are tens of patients who are old, confused, angry, hostile, lonely, unable to look after their own welfare in more or less obvious ways, or just plain dumb - and barely able to understand what their problem is, never mind explain it.
So it's not an easy profession - not because doctors have to be unusually competent to do it, but because they deal with all kinds of people with all kinds of problems in all kinds of situations, and it's normal for many of those people to be very bad at being able to explain why they're there.
Also, it has gotten worse. Before the ACA there used to be a barrier where to see a doctor you essentially either had a job or money which would weed out a lot of the nuts.
Edit: A scan of the internet seems to show most physicals are checking vitals, blood tests, and some lifestyle questions... unless you're old or have an existing health complication in which they check more stuff.
Also I'm vegetarian so I like to check iron, creatine and B-12 levels. And I like to take the opportunity for a free STD check.
The Emerging Role of Microbial Biofilm in Lyme Neuroborreliosis[1]: "The early treatment with oral antimicrobials is effective in the majority of patients with LNB. Nevertheless, persistent forms of LNB are relatively common, despite targeted antibiotic therapy. It has been observed that the antibiotic resistance and the reoccurrence of Lyme disease are associated with biofilm-like aggregates in B. burgdorferi, B. afzelii, and B. garinii, both in vitro and in vivo, allowing Borrelia spp. to resist to adverse environmental conditions. Indeed, the increased tolerance to antibiotics described in the persisting forms of Borrelia spp., is strongly reminiscent of biofilm growing bacteria, suggesting a possible role of biofilm aggregates in the development of the different manifestations of Lyme disease including LNB."
Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease[2]: "Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates. The optimal treatment for persistent Borrelia infection remains to be determined."
If you want to know more, here's a thorough critique of the current Lyme policies.[3]
[1]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/ [2]https://www.ncbi.nlm.nih.gov/pubmed/29662016 [3]https://waset.org/Publications/obstruction-to-treatments-mee...
In January 2016, the NGC removed the Infectious Diseases Society of America (IDSA) guidelines on Lyme disease for these reasons. In a scathing report on the standard of clinical guidelines in North America, the Institute of Medicine specifically referenced the IDSA guidelines on Lyme disease as a prime example of what not to do. Now, the only evidence-based, peer-reviewed guidelines on Lyme disease that conform to (and exceed) the Institute of Medicine’s clinical guideline standards and are available on the NGC website, are the International Lyme and Associated Diseases Society guidelines for Lyme disease (ILADS). ILADS guidelines recognize persistent Lyme and have cured thousands of patients.
Meanwhile, the CDC is still promoting the ISDA guidelines that deny the evidence of persistent Lyme Disease. The CDC claims that these 2006 guidelines represent the "best science" and "the best synthesis of the available evidence". They do not provide the reference or criteria to substantiate this claim. And they are ignoring over 700 peer-reviewed articles that support the persistent Lyme theory.[1]
[1]https://www.ilads.org/wp-content/uploads/2018/07/CLDList-ILA...
So, first time a doctor asked me if I did CrossFit, I thought it was a bit odd but didn't think too much about it. The third time a doctor asked "Do you do CrossFit?" I replied "Does it look like I do CrossFit?!" and she was like "Yeah, it does."
Apparently it's not uncommon where I live that there is some sort of vegan CrossFit disease, where the 80% of the treatment is is to stop being vegan and stop doing CrossFit.
I think years of physical stress from crossfit triggered latent disease. I'm still trying to get my body working normally again.
Yoga and CBD are helping.
Your muscles (and blood) rebuild on rest days.
So vigorous daily Crossfit would kill you. (see rhabdo)
Nobody, for example, runs a daily marathon, or even half-marathon.
Also, if you're OC enough to do that, you prolly have other issues too.
“Adrenal fatigue” is an alternative medicine diagnosis. It’s a seductively simple narrative for people seeking answers to unexplained medical issues, but the theory is very much pseudoscience instead of actual science.
The biggest red flag for the adrenal fatigue theory is the claim that current blood tests are not sensitive enough to detect it. This is a common trick used by alt-medicine practitioners to dodge contrary evidence. We have medical tests to diagnose genuine adrenal insufficiency (Addison’s disease), but it’s an extremely rare disorder. Statistically speaking, you almost certainly do not have adrenal insufficiency.
The truth is that your adrenal glands are part of a larger system of feedback loops in your body. The adrenal glands don’t operate independently as the adrenal fatigue theorists would suggest, but rather they work in concert with your brain’s hypothalamus and pituitary in a feedback loop known as the HPA axis. Wikipedia can shed more light on the details of HPA axis functionality, but the key point is that the adrenal glands depend on inputs from your brain. That brings me to my main point:
> When doctors and specialists can’t figure it out they send you to someone else or suggest psychiatric issues.
Psychiatric issues can and frequently do manifest primarily as physical symptoms: Lack of energy, low stress tolerance, digestive issues, oversleeping or insomnia. These are hallmark symptoms of depressive disorders.
The fact that your symptoms started around the time of high stress at work combined with frequent, intense exercise is probably not a coincidence. It’s extremely common for people to notice the physical symptoms first and assume that their problem must be located outside of the brain. Your resistance to any psychiatric diagnosis is an extremely common response. Frequently, patients are offended by any suggestion that the origin of their problems is “all in their head” because it feels like a dismissal of their genuine physical symptoms.
However, the key thing to remember is that your brain and your body are not separate systems. They’re one in the same. It took me a long time to realize that drawing a line between mind and body is an artificial boundary that isn’t a helpful distinction when your problems almost certainly overlap both systems.
I think “adrenal fatigue” has become a popular alternative medicine diagnosis precisely because the adrenal glands are located outside of the brain. As I mentioned above, the adrenal glands take inputs from core brain structures. Your adrenals will only produce what the brain tells them to produce. Yet, no one wants to admit that their brain is right place to solve these issues, so they over-focus on the one part of the system that lies outside of the brain. Psychiatry and modern medicine has understood for decades that HPA axis abnormalities are intimately linked to depressive disorders, and that successful depression treatment in any form (therapy, medication, combination) normalizes HPA axis function. At this point, the hardest part is convincing patients to accept psychiatric treatment and give it appropriate time to work.
I’m glad to hear you’re feeling better, but I would encourage you to give your doctors a chance when they suggest psychiatric issues. You’re basically a textbook case of stress-related depressive symptomology. Modern psychiatry may not be perfect, but it’s better than years of unaddressed fatigue and suffering.
I had attempted all the psychiatric treatments recommended to me. None of them ameliorated the physical symptoms.
Then I discovered what physical compounds my body was missing, and the physical symptoms AND mental symptoms resolved. So yes, the mind and body are not separate. They are constructed out of the exact same basic building blocks.
Typically people with ME/CFS/FMD get worse if they push themselves. The key to recovery is rest first and foremost. The symptoms of FMD seem to be a protection mechanism by the brain, and pushing through the symptoms just make it worse.
http://dx.doi.org/10.1037/0033-2909.133.1.25
Unfortunately the "adrenal fatigue" crowd have taken this little bit of science and completely mangled it, blaming the adrenal glands themselves and pushing dubious supplements that have no scientific basis.
In reality I had stress-induced depression with a high degree of physical fatigue as one of the symptoms. When I stopped being depressed, my fatigue went away. Adrenal fatigue is nonsense.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938692/
Also, the reason the guidelines were removed from the NGC is that they hadn't been revised in 5 years.
https://lymediseaseassociation.org/news/official-word-on-ids...
And the new draft guidelines from the Infectious Diseases Society of America doesn't appear to agree with your position either.
https://www.idsociety.org/practice-guideline/Lyme-Disease-Gu...
Regarding the new guidelines, there are significant admissions:
-The limitations of antibody testing (page 10, line 234), and that a patient can be seronegative
-Lyme arthritis only occurs in a minority of 30% (49:1147)
-Patients should be retreated if 28 days of doxy does not resolve arthritis (55:1280), ultimately with up to 1 month of Rocephin/ceftriaxone
-Animal studies may demonstrate persistence in avascular areas (56:1311)
-They infer that evidence of a persistent infection or treatment failure can be concluded through objective signs of arthritis, meningitis, or neuropathy (62:1429)
-Studies of the chronic Lyme population are recommended, and they claim (without citation) that these patients often have no clinical or lab evidence of infection (64:1493)
-Babesia coinfects 2-40% of patients in endemic areas (67:1551)
When viable spirochetes were found after antibiotic treatment, one of the leading IDSA researchers response was "So what? You'd have to prove they are causing disease". Apparently germ theory is now in question when it comes to Lyme disease, and only Lyme disease. For every other infection, if the pathogen is found, you have the disease. Not with Lyme though. It's pure dogma at this point.
I've cured myself. Who have you cured? No one I'm sure.
To me, it seems it's a theory to compensate for medical imaging technology that has far too low resolution. Doctors hate admitting that they don't know what's wrong, so instead they claim that the patient is crazy in politically correct terminology with an excessive number of syllables.
Structural tissue damage starts at a molecular level that cannot be seen by medical imaging technology. The fascia alone is too thin to be imaged at all, and so is completely ignored.
Biochemists have delineated in explicit detail how tissue breaks down at the molecular level. And they can reverse it. We need to start listening to them more.