Absolutely, I'm right there with you. I had 3 different doctors tell me I was crazy before I said fuck this. The most helpful book that I have found is "Why Isn't My Brain Working?" [1] by Dr. Datis Kharrazian, he is both an MD and a naturopath. Lots and lots of insights into why the brain fog is happening, and even more advice on diet, lifestyle and supplementation measures to minimize it.
I seem to have some dietary autoimmune stuff going on as well which is incredibly difficult to deal with, my friends know me as that person who brings home cooked food around everywhere, as I know there are no spices or grains that will set me off. Eating out I usually just order a salad with no croutons, no cheese, no nightshades, no dressing outside of olive oil, and a meat to go on it. But even then, if the meat has spices, I'm in trouble.
>I had 3 different doctors tell me I was crazy before I said fuck this
But what do you think mental illness is, if not an autoimmune disorder?
I try not to think about it, but when I was diagnosed 15 years ago, I had a reaction to a psychotropic drug and the pharmacist said "oh yeah, that's an antihistamine, so don't take more OTC antihistamines to try to deal with the reaction". And I switched to something that wasn't so bad, and never thought much more about it for a long time.
Then after a decade and a half, for various reasons, but particularly to check for celiac, I finally went to an allergist to be tested for common allergies, who said "oh yeah, your medication is an antihistamine, so you'll have to stop taking it for a few days in order to be tested". Which I decided I really can't.
I feel like nobody says it most of the time, or acts on it, and many don't have any idea, but it is widely known at the same time. Which is eerie.
Oh you're right, my apologies. I would still argue that he knows a thing or two about autoimmunity:
As a researcher, Dr. Kharrazian earned a PhD degree in Health Science with concentrations in immunology and toxicology and a Doctor of Health Science (DHSc) degree from the Department of Health Care Sciences at Nova Southeastern University. He completed his post-doctoral research training as a research fellow at Harvard Medical School and worked as a researcher at the Department of Neurology at Massachusetts General Hospital, where his research focus was in autoimmunity and neuroimmunology. Dr. Kharrazian also earned a Master of Medical Science degree (MMSc) in Clinical Investigation from Harvard Medical School. Dr. Kharrazian is an active member of the Harvard Medical Alumni Association and the American Association of Immunologists.
>I had 3 different doctors tell me I was crazy before I said fuck this.
Most doctors don't go too deep. They do the equivalent a support call center employee does when "helping" you by reading from a number of pre-made support scripts.
Very interesting to hear your experiences. I have long suspected some sort of autoimmune condition (specifically undifferentiated spondyloarthropathy) resulting in me having similar symptoms. My first symptom was tendonitis, but I was 22 back then (37 now) and very physically active so doctors just attributed it to overuse. Then both elbows tricep tendons developed enthesis and ossified at the insertion point. I have similar enthesis in basically every major joint now, and they still think it's from the exercise. I did push my limits with weights when younger but it's difficult to imagine that being the cause of all the issues I've had.
Similar to you, CRP tests were fine and bloodwork was all good, however they did find I was positive for the HLA-B27 antigen which is a known marker for autoimmune conditions and only present in about 5% of the population, but present in 90-95% of those with spondylitis, so there's one red flag. The issue is as you mention, there is no definitive diagnoses until they see joint damage on X-ray, and by then you've missed years of potential intervening treatment.
Eventually I developed brain fog like you describe, but it was gradual and difficult to tell if the symptoms were related. It's not always debilitating but I'd say 4/5 days I'm foggy to varying degree, and then one day where I'm about 3x sharper. I've learned to just ride the productivity wave those days and do mundane stuff other days.
I thought it may be sleep related, and although getting more sleep does seem to give me a higher probability of a "good" day, it's not a panacea. There are days where even after 10 hours I'm still foggy, and I can tell immediately upon waking up how the day will go.
While I'm sympathetic to those who say googling your way to diagnoses can be harmful (and no doubt it may frustrate some doctors), I don't entirely agree. You have to live with your body and mind 24/7, and you have one and only one patient to care for - yourself. You will always be more motivated to find the answer than your doctor. A doctor cannot read your mind or feel your pain, and simply pattern matching symptoms is something anybody can do. It can never hurt IMO to go into the discussion informed and ask pointed questions.
The medical field is an evolving science, they don't have all the answers, they don't even have most of the answers.
Have you seen a Rheumatologist? They are your best bet for diagnosing spondyloarthropathy early. Your symptoms along with being HLA-B27 positive should be enough to get you an appointment.
Several. HLA-B27 is an indicator, but you can't diagnose definitively without seeing joint deterioration on X-Ray or MRI. Typically for Ankylosing Spondylitis it's the SI joint that has the most damage, which for me is fine so far. The problems I have are more peripheral joints, and the only changes I have on X-Ray are bone spurs at the insertion point of several tendons which can result from overuse so it's hard to attribute to a rheumatological condition with any certainty.
Most recently a rheumatological told me some people are just "bone formers" which might be true, but is still frustrating to hear as it kind of came across as very hand-wavy.
Second that. There's also ultrasound measurements to help diagnose inflammation related damage. Perhaps a sympathetic rheumatologist might put you on a trial run of one of the moderate RA treatments to see how you do.
On my out of commission days, I'm foggy but I can still get stuff done, I just won't be able to operate at the level I could on a good day. It's frustrating because you know your capabilities, but you just can't get there. Imagine running a 6 minute mile, and the next day you give it 100% and 8 minutes is a struggle.
I try to prioritize creative work, e.g. building something new, really hard problems, etc. for "good days", and I focus on work that I've already begun and can see the completion path for on bad days. I do occasionally have days where I'm totally useless, and if that happens I'll just do mundane rote tasks that I've been putting off.
There's a lot of discussion of "inflammation" in this thread, but does this mean anything other than "feeling bad" in practice? It seems C-reactive protein (CRP) is the main biomarker for inflammation. Do people get tested for CRP to diagnose their triggers? I don't think I've ever been tested for it. Will a typical GP give you a CRP test if you ask for one?
Not all autoimmune conditions show up in bloodwork, and sometimes they only show up when they’ve progressed to the point of organ damage. Typically this lack of positive tests is used to invalidate the experience of people with those conditions (usually women). This often seems to come from the implicit assumption that we know all the physiological markers and mechanisms of autoimmune disease, when nothing could be further from the truth. We know very little, and how a patient feels matters.
I’ve met people with “all the markers but one” and thus never get a neat diagnosis of a known disease, and it’s very devastating to live with that kind of an unknown where doctors have so few answers or cures (not that they have all that much more with known AI diseases, but it’s more comforting to be bucketized than most people know). For lack of better solutions they can get put on daily prednisone for months (or years!) which causes a wholly different set of health challenges to manage the first. It can be very hard for folks walking homeless through a desert of autoimmune knowledge. Often my advice is, “what would you do if you had that last marker? Adopt a lifestyle as if you did: watch your food intake, do gentle but regular exercise, get plenty of sleep, reduce mental and physical stress, avoid excess (sun, drink, food, etc).” I’ve yet to meet anyone with a neat diagnosis that wants to be on immunosuppressive drugs, so even these folks must strive to manage their disease through disciplined lifestyle changes.
I also understand the need for doctors to be measured in their diagnosis, so I don’t begrudge them for following protocols established for disease qualification. I don’t think of it as invalidating experiences of patients (though it can feel that way to patients) but everyone is aware of those that want a diagnosed health problem, and to a more frequent extent, those that want a tidy answer to their experiences even if there isn’t one. Denying a diagnosis of a known disease is not denying a diagnosis at all.
There's a huge benefit to getting a specific diagnosis. Treatments for Lupus vs. MS vs. vasculitis vs. other AI diseases are very different. And many of these are life-threatening without proper treatment; lifestyle changes won't cut it.
My wife struggled with weird autoimmune symptoms that eventually progressed enough to get a diagnosis. At the time of her diagnosis, her life expectancy without treatment was 1-2 years. I empathize a lot with patients and doctors who are trying to dial-in on a mysterious illness.
Yes, agree on the benefit of a specific diagnosis, but those aren't available to everyone with autoimmune symptoms. As mentioned, there are people who check all the boxes but are short one or two to get a specific diagnosis.
In these cases, the psychological toll is pretty heavy - the uncertainty of your future while your very identity is being challenged. I've seen people respond badly - instances where people engage in a tragically comic route of turning to chronic alcohol intake, becoming inactive/sedentary, bandaging emotional pain with bad diet, etc. Precisely activities that are known to aggravate autoimmune disorders. This is a horrible reaction.
Now, even with a specific diagnosis, the first thing your rheumatologist is going to tell you is that you need to make lifestyle changes - diet, sleep quality, stress levels, etc. That's going to be solid medical advice regardless of what drugs you go on.
For those without a specific diagnosis, adopting these lifestyle changes is still good advice and within reach. There is no instance I've seen where someone with an autoimmune disorder can rely solely on drugs and be otherwise "normal". The drugs (especially those beyond hydroxychloroquine) have unpleasant side effects of their own that need to be managed. In all cases with drugs, the goal is to get the disease itself into a managed state, and ideally into remission. That's not possible for everyone, but for plenty of people it is possible to manage mild instances of disease without drugs, and enough of a possibility that I think it's at least worth a try. This doesn't mean stopping your drugs and doing reckless experiments, but in consultation with a rheumatologist weaning off drugs while having adopted lifestyle changes that avoid known triggers for flare ups. If it doesn't work, go back on the drugs.
Had to push hard for further testing. Plus just trying the treatment.
Had a big positive response. If I hadn’t pushed they would have just had me come in once a year to “check”.
You don’t need to ask a GP for blood work, just order it online and go to the lab, then get your results via the lab’s portal (e.g. Quest).
I’m not sure these tests are good for diagnosing triggers though, compared to quarterly or biannual management of a disease (to make sure you’re not headed off the rails). The range for CRP, for instance, is relatively broad. What’s serious is when you’re exceeding the reference high.
In these cases (like maxed out SED rate) chronic inflammation is a thing and more than “feeling bad”. It does lasting damage so the quicker you can respond to it the better, and IME that kind of inflammation sneaks up on a person and often goes undiagnosed until other downstream problems start to present themselves.
There’s a bit of fashion to talking about “cytokine storms” and inflammation that is partly healthy to be aware of (and interesting to the seriously curious) but also a lot of faddish health nuttery lately. Be careful of the snake oil salesmen out there, folks.
Diets, supplements, exercise equipment, OTC meds, are as often nets to harvest disposable income more than they are serious approaches to managing disease.
For people suffering autoimmune disorders, much can be done with simple balanced diets and regular low stress body weight exercising. The key is avoiding things like excessive drinking, high mental stress levels, sleep dep. All the good advice for Puritan living that really applies to all of us, just that they have far, far lower tolerances for deviation. Response to NSAIDs may indicate what you’re fighting but if you’re there you’ve already failed upstream from where you are now. Chronic NSAID use isn’t all that great either but is often an unavoidable supplement for those trying to hold a normal career these days. This kind of internal feedback loop is more cost effective and probably more accurate for behavior correction than looking at daily blood work.
Do you think SED rate is better than CRP then? It doesn't seem like I've had that test either. I have hypothyroidism, which can be autoimmune related, but no doctor has ever suggested either test, nor mentioned inflammation. I get TSH tested every 6 months though, and sometimes have to adjust Synthroid. I've asked about the causes of these fluctuations and doctors basically just shrug. I have no theory for it either.
I'm not sure if you mean better in terms of diagnosing triggers or generally to diagnose disease. Again, I don't think these blood tests are good for diagnosing short term triggers, but monitoring your TSH levels after some longer-term controlled lifestyle experiments can be very informative.
As far as diagnosing disease, there are many blood tests broadly that one would/could run to aid in diagnosing autoimmune diseases, including ANA pattern and titer, DS Antibody, SCL-70 antibody, ANA screen (IFA), SM antibody, Sjogren's antibodies, ANCA screen, P & C ANCA titer, rheumatoid factor, CRP, compliment levels (e.g. C3, C4), SED rate, white blood cell counts (neutorphils, lyphocytes, eosinophils, basophils, monocytes). Tests for organ function can also be critical in evaluation.
I don't know much about hypothyroidism, but my advice is to do a lot of self-education, reading as much literature as you can about it. Journal your behaviors, habits, stress levels, sleep, and food and identify patterns yourself. You can do this by eliminating certain environmental or dietary factors for four or six months, then do TSH tests again. You have to be careful of changing too many variables at once. I know it's a pain in the butt, but desperate times call for desperate measures. You want your disease to stay in a managed state and prevent any immune system issues from spidering into other disorders. If you have these potential warning signs of your immune system starting to crack, my advice is to do everything you can to protect it from reaching additional failure points.
A high SED rate might accompany many conditions like Parkinsons, cancer, or autoimmune disorders - it's a broad quantifiable test of how severe your inflammation is regardless of cause. When it causes concern, it's typically off the charts. "Normal" SED rate is about 0-15, while an out of control systemic condition can drive it far north of double or triple the high reference point (not just slightly over).
The SED rate doesn't identify its cause, so ANA and CRP can be ordered after a high SED rate (along with tests such as CBC, urinalysis, etc that would indicate other possible causes). CRP and ANA tests are pretty specific to autoimmune diseases.
ANA is most often associated with SLE (lupus). Not all AI diseases have positive ANA screen, and even in SLE once it's in a managed state both SED and ANA titer would ideally be back within spec.
I'd be curious (if you do regular blood work) do you have a SED rate within spec but an ANA titer out of spec? Or "just" a positive ANA screen test?
What is NSAID? I recall some warning on Advil (or Tylenol)?
Does this mean this is a typical of someone to be prescribed with autoimmune disorder? I was curious to know how one might discover on their own if they have it. As well as the effects of how someone feels (or changes) by taking NSAID ...
Ibuprofen is used to control inflammation. Often when a rheumatologist sees frequent use they can prescribe a sustained release NSAID that doesn't present as much risk to the stomach, etc., compared to frequent dosing of OTC pills. Since this medication is just attempting to control inflammation, it is taken in response to a mild or severe flare up to try and make the pain stop, but isn't always the most effective. The best solution for people in these cycles is to journal their behaviors, habits, sleep, food intake, and try to find patterns in what causes the flare-up and then avoid those in the future.
Diagnosing an autoimmune disease on your own isn't advised, you should really see a specialist, not a GP. Specifically, get a referral to a rheumatologist. Blood work, sometimes xrays are required to properly diagnose. There are some 200+ known autoimmune disorders if I recall correctly, many people end up with a two-for-one deal. Sjögren's and Raynaud's seem to be not uncommon companions of other disorders, for instance.
I appreciate the info here! I see a lot of comments for this thread. Are they experiencing a specific inflammation flare up as in case of a pain? Or are people here referring to the flare up as the brain fog?
“non-steroidal anti-inflammatory drug”, a class that includes many popular non-opioid painkillers including aspirin, advil (ibuprofren), and aleve (naproxen), but not tylenol (acetaminophen/paracetamol).
Which kind of antigen tests? I have had a CRP test that wasn't really indicative of any problems. I would love to be able to get a doctor to agree with me that there is something wrong.
Various Ultrasounds, cat scans.
I basically don’t sweat. Tears are very rare. I cried for first child born, I didn’t for second, even though I felt the same. Was an early symptom. But felt bad for years.
In case of pancreases, I got pancreatitis. Turned out that was an early sign of Sjogrens. At that point ultrasound was clean. Years later, Now it shows damage.
I see it in my lipid panel (there's heart disease risk in my family) so that may be one way to get it. But INAD and welcome other comments on how to ask for this; it may just be my gp.
What have been the most effective lifestyle changes you've made? And how long did it take you before noticing their effects? Hope they continue working for you!
Support groups are best. Knowing your not alone. A safe place to ask questions. Facebook groups are biggest and best. Reddit has a lot too. Various podcasts and foundations.
From these you start seeing patterns in what works for people, how to find doctors.
For me.
In order of improvement.
Prescription: plaqunial.
Blood thinners.
Avoiding flare triggers, Sun, heat, most foods.
Diet is huge.
Autoimmune protocol diet is best for me. Similar to keto, etc. Personally I’ll eat a lot of sweet potatoes when I need relief. Safest food I have found.
Supplement: Vit D, magnesium, Vit E, fish oil, B complex, CQ-10 turmeric.
Autoimmune often means a lot of secondary conditions, or autoimmune is the secondary.
Increased cranial pressure is somewhat common with Sjogrens for example. High pressure is brutal on the mind and body.
Went from bed ridden in horrific agony all day to kayaking or equivalent every weekend.
It makes me so happy to read this! I too have had a drastic transformation in terms of life quality.
I second the Anti-inflammatory diet and exercise (even just walking contributes greatly). I echo the supplement suggestions and also recommend glucosamine+chondroitin (which happens to lower all-cause mortality significantly).
Red meats (high omega 6 content), deeply fried foods, gluten (plenty of grain alternatives to wheat and corn), uncultured dairy (cheese seems ok, plenty of alt-milks out there), and sugar not from fruit can trigger inflammation for me. I might describe my diet as vegan+eggs+fish (ovo-pescaterian?)
There is a wealth of information online to tailor one's diet. Honestly - this is a diet that everyone can benefit from health wise.
I found following a "yellow / red flag" system helps me. Some foods will trigger my inflammation (many of the ones on your list), however it often requires multiple overlapping stressors or triggers. So on any given day, eat one bad food item it's a yellow flag. Eat two bad food items I'm on a red flag condition. Or perhaps it's work stress and food, etcetera.
The reason for the yellow/red flag system is to not impose a strict limit, but as a way to inform myself I'm in a danger zone. Primarily because many foods I love (ahem brownies!) are a flagged food. Telling myself "no", when I'm stressed or foggy state, often fails. However a "red" flag state helps bring out my inner engineer: “Can'nae take any more, Captain!”
That's a really good way to formalize things! I've been following a form of this subconsciously, it seems. It's great to fall back on a tried and true system when the willpower or appropriate state of mind isn't there to make the choice simple. Sometimes one just needs a way to ensure the yellow flag one would really enjoy doesn't turn into a red one.
There's probably a terrible joke to be made here about red shirts but I can't muster it
I'm jealous that you can eat grains! Any kind sets me off unfortunately. And yeah it took me a while to realize but any kind of fried food is bad for me. So even eating coconut tortilla chips sets me off, despite the fact that they contain no grain. I am hopeful that in the future, more paleo / autoimmune paleo targeting brands come out. There was already a pleasantly surprising amount of brands catering to this, last time I was at a whole foods.
For those who can't tolerate dairy, or any kinds of nuts or seeds or grains, one kind of food that you might enjoy is coconut yogurt. Not cheap but it helps to break some of the dietary monotony.
Ah, that's a shame... Nuts and seeds actually make me feel a lot better (was my only snack for a while, when I couldn't eat fruit) and I feel lucky to be able to eat brown rice. If I eat wheat-based pasta or bread however, my body will let me know in minutes.
It really is awesome that we can find what fits us with large store brands that deliver! Never knew how many forms of vegan protein exist out there
Wait...isn't cordyceps the fungus that takes over ants, bursts out of their skull, and then cause them to effect others? That sounds like something I'd run away from at full speed.
Do you have a link with more info? I just popped 2 of these [1] an hour ago as I had eaten some kind of food/protein bar that tasted like it contains pea protein, a known trigger of mine. I live in a country where I can't read the language so I'm not sure exactly what I ate.
Had loads of brain fog for 2-3 years straight in college. Kept gradually getting worse, changed about 20 docs, nobody knew how to treat it and they thought I had mental health problems.
Then I took matters in my own hands, joined some forums and subreddits, turn out loads of people were like me. Literally thousands of people in online communities had undiagnosed Low Testosterone. Most docs are uneducated about this as they just look at the blood test lab results, and group everyone from age 20 to age 70 in the same category. Went to a mens health doc, gave me TRT, symptoms gone in a week. Literally saved my life and career, I almost dropped out of college. I put my dad on TRT too, and litterally I tell everyone about this. The Low T epidemic is a really serious issue!
I was very tired all the time. Doctors took blood tests and found out I was low on testosterone, called in a specialist that looked at the same blood tests and said it was ok because I had enough free testosterone if I remember it correctly. Never did solve it. Any advice?
Of course, join r/testosterone read the info. Then, go do blood tests again. Total T has to be >600 ng/dl no matter ur age or what anyone says. If you dont want to bother diagnosing yourself, find a mens health doctor in your area on the subreddit. If you cant, then I can advise you further I will give you my contact. I am on it for 2 years already, I put my 60yo dad on it as well, I have a doc in NYC called Dr Rotman, I can give you his contact if you live nearby
Yes of course, T is always measured in the mornings as thats when its peaking. Ive probably measured my T around 5-10 times before getting on TRT. Mind you I am in my 20s, everyone was shocked. Also, not only Total T but measured Prolactin, did a contrast brain MRI, SHBG, E2, Albumin, Free T, Thyroid profile, Calcium, and a bunch of other things probably.
Exactly, Low T / Hypogonadism can be caused by either primary (testicles not producing enough because of some idiopathic reason or injury or even mumps) or secondary reasons (pituitary gland which is located in the brain not releasing hormones that would in turn signal the testicles to produce T). When trying to figure out whether its primary or secondary one has to measure FSH and LH levels, low meaning brain doesnt produce enough, high meaning brain produces a lot but testicles dont work as good. Mine was average so that was kinda weird, you gotta measure LH and FSH multiple times to get the clear picture. Brain contrast MRI didnt show up anything. If there was a pituitary tumor, thats the easy part actually since around 3-5% of the population has it but it is super undiagnosed since a lot of people dont have any symptoms, its very benign. Basically you take this pill called cabergoline for a few months, boom tumor gone and your T will spike up again. But otherwise you would have to do TRT, and add HCG to it if you want to preserve your fertility. But you have to watch out and get a really good doc or two, and research yourself on the subreddit and ask questions. Recently my coffee habits skyrocketed which plummeted my SHBG which literally destroyed my T again even though I am on TRT. If I didnt educate myself enough on this matter I wouldve probably given up and thought it doesnt work. You gotta watch out of SHBG and E2 while on it. Once you get everything right literally its a gamechanger, I mean anything is achieveable not kidding. There was also a guest on Joe Rogans podcast that started a nonprofit after he had uncurable depression and he was on the verge of killing himself and some doc found out he had hypogonadism and within a month the depression was gone, and since then he staretd a nonprofit for it and saved around 200 lives that way. If there was a Testosterone ETF I will go long on that with all my money...
I haven't found anything else to be as helpful than Redbull (with actual sugar) for inflammatory brain fog. More on the sugar, but the B6 and Niacin help to bypass whatever it is wrong with brain energetics when inflamed.
It doesn't have to be Redbull, but where else are you going to get 30g of sugar and a few helpful vitamins out in the wild.
An alternative would be to make some tea/coffee/yerba mate, sweeten it, and take a B-complex vitamin. Now you know exactly what you're getting and what you aren't. For the record, excess sugar and processed/packaged/canned goods highly correlate with inflammation in my own experience.
Also there was a study that showed greater than 160mg of caffeine per day may increase inflammation in those predisposed to it, whereas the group that consumed <120mg had no negative effects. Can try to dig it up if someone is interested.
Now you know exactly what you're getting and what you aren't.
If I remember right, the only ingredients in Red Bull not listed by name are the artificial flavors (and maybe some colors). And those have to be drawn from GRAS don't they?
It's always seemed strange to me that we are more willing to trust plants with thousands of unknown chemicals, over a simple energy drink with like ten chemicals, all listed.
Various flora have been in a push and pull balance with fauna for hundreds of millions of years. I find it more likely that something whose very reproductive cycle depends on being eaten by animals is the healthier alternative to something engineered for a singular purpose without long-term testing on humans.
I was once a multiple-a-day energy drink consumer. The fizzy caffeine+sugar+choline+inositol mixture in a can has barely been around a few decades. Do you know what compounds the artificial flavors are? I've since switched to getting my caffeine from plants. It's been verified by a plethora of civilizations over thousands years.
A veterinarian was the one who diagnosed me with Addison's disease, after noticing that my neuromuscular symptoms were similar to German Shepherds with the condition. This was after seeing 5+ human specialists who either couldn't figure out what was wrong, or (more commonly) didn't believe anything was wrong.
Addison's is deadly if left untreated. According to my endocrinologist, I was scarily close to death.
Doctors are quick to discourage patients from "Googling their symptoms", but patients (and their veterinary friends, lol) need to advocate for themselves. If I hadn't taken the tip about Addison's seriously and demanded tests from my primary care, I could very well be dead.
One of the things I discovered a few years ago is that I can order my own lab tests and pay out of pocket (in the US, not sure how this works in other countries with functional healthcare systems). This way instead of wasting 1 doctor visit on ordering a test I can go to my doctor directly with test results in hand and discuss any outliers, etc
There was an executive order by the governor to allow more flexibility for Covid tests. Pharmacists are now allowed to order Covid tests. And when you show up at a testing site at a clinic or hospital, your test will be recorded as "ordered" by a doctor or nurse practitioner that you never actually see in person.
You have to do your own research. You will be dismissed as a hypochondriac.
Learning to live with all the labels from a chronic condition is one of the hardest parts.
> Learning to live with all the labels from a chronic condition is one of the hardest parts.
If this isn't the truest thing. It's very difficult when you have doctors--who society tells you to deeply respect--calling you a lazy liar.
I don't think I would have been diagnosed if I didn't have a supportive family who insisted it wasn't "all in my head" and that I needed to keep searching for answers. It's very easy to start believing what the doctors say, no matter how loudly your body is screaming otherwise.
And then there's the opinions of general people... It's surprising how ignorant highly-educated engineers can be about medical issues. Again, I credit my family and friends for having kept my sanity all these years.
Interesting that it was a veterinarian that diagnosed you. I've noticed a pattern of veterinarians seemingly being better doctors than human doctors. They seem to pay more attention to current research and continue their learning, and rely less on what they learned 20 years ago in med school.
Agreed. They are perhaps the most underestimated professionals in the medical field.
They don't just memorize information about one species, they need to know how to treat 5+. They do all their work without the patient giving verbal clues/feedback. And they often have limited resources/tests/treatments they can use to save a life.
They are some of the most creative, intelligent, and passionate minds in society. Although I may be a bit biased, based on my experiences. ;)
Seconding this experience. Western medicine is bad in general at treating chronic conditions that aren't immediately life threatening, but you would really think that general doctors would be more aware of autoimmune issues considering how common they are.
For anyone going through this fresh hell currently, I'd estimate my hit rate at about one out of 6 or 7 for doctors who'll actually look in depth versus those who were apparently just good at memorizing things for tests and can't diagnose their way out of a wet paper bag. If you haven't gotten at least that many opinions and are still suffering, keep trying.
Also, quacks are a problem too. Too many of those promising cure-alls.
Most doctors think Sjogrens means dry mouth and dry eyes. They advise eye drops and gum.
I basically quiz doctors until I find one that knows the basics.
I have a rheumatologist. But if I need forms filled out only a PCP will unusually do that. Unless they don’t, then your screwed royal.
This has been my experience with some ongoing/recent neurological symptoms. Ahidrosis, brain fog, reduced sensation, the list goes on. No doctor has outright said it was wholly a mental issue, but they're basically only willing to prescribe antidepressants or benzos. Sadly for most obscure problems you have to seek out help yourself.
WRT reduced sensation and sweating: you may want to find a neurologist who deals with dysautonomia, and maybe get autonomic function testing done. Also look into small fiber neuropathy. There are support groups for these on FB and the like that may have useful information or referrals to good doctors. A lot of doctors hear small fiber neuropathy and only think diabetes. But it’s frequently associated with dysautonomia, progressive and autoimmune/inflammatory in origin.
I saw 3 different doctors, they all just figured I was depressed. I then started reading and searching online like crazy, most helpful resource I've found so far is at http://brainhealthbook.com (also easily pirated), that author is both a naturopathic doctor and an MD.
edit to add: You said 'diagnose and fix me' ... even if they can diagnose you, they won't be able to fix you. Just a warning. Best you can do is to manage the condition.
2 ways.
I started tracking my memory score over time.
https://memtrax.com/
At my lowest it would frighten people to watch me take the test.
“You just saw that image 3 times in the last 60 seconds” Me: I have never seen that image before.
At my best I could outscore most anyone in the office.
Second is more arbitrary, but more important.
Been programming for decades. Since I was a kid. A task that normally would take me a few minutes might take me a week. Harder concepts were beyond me, felt like I was trying to tackle calculus after learning fractions.
I “knew” I could do it, except I couldn’t anymore.
Then I would have some good days, and I would go around the office solving all the really hard problems for people.
As person with disabilities and physical health problems people are often at awe at me for how I go on with my life and now I'm looking at the same awe at you.
Do you feel there's anything missing with memtrax or any other tool which can make your life easier i.e. help track your cognitive health or help your current lifestyle?
Not OP but I live in a different country where I barely speak the language. I can turn on the TV in the morning and depending on how easy or difficult it is for me to parse what they are saying, tells me how sharp my mind is that day.
Similarly to the sibling comment, I spent years struggling. There were points where I sat down to write a super simple Craigslist scraper and couldn't do it, my working memory was so poor that it was like I couldn't hold more than 2 or 3 concepts or ideas/variables in my head at the same time. This task is something that I knew just a few years before I could have whipped up in 30 minutes or less.
Do you use any tools like OP to help with your lifestyle? I know memory is a complex problem even for those who don't usually face explicit issues like you do; but does common memory retention practices like 'spaced repetition' made any positive improvements for you?
Definitely. Most of the time I'm pretty sharp, although I definitely have days where I basically can't get anything done. I have just started using Anki to great effect (preparing for programming interviews is a nightmare if your brain is a sieve).
Since I know that my symptoms are almost entirely caused by diet, I have written down everything that I've eaten, every supplement that I've taken, every hour that I've slept, every noise or pain I feel in my stomach, and information about all of my bowel movements since 2017.
I thought I had things under control last year, and didn't take any notes for 2 months. Now I have an issue with H2S bacterial overgrowth, essentially a sulfur sensitivity. "If it can be measured, it can be managed."
The fact that I moved to Europe in October to avoid the pandemic and election nonsense, hasn't helped me. There are tons of supplements and tests that I would be able to get in the states that are simply unavailable in the country that I'm residing in. Pretty frustrating, and tbh, I can't wait to get back, hopefully late spring/summer.
You seem to be as fanatical about solving this issue as me, I'd love to hear what tests you want to get.
Unfortunately, I have terrible brain fog, which mostly affects my working memory. This has plagued me for over a decade. As you noted, programming interviews are a nightmare.
Through the autoimmune protocol diet I discovered caffeine has a negative impact on me. I've noticed a small, but not insignificant improvement through cutting out all caffeine. Previously, I drank several cups of coffee a day.
I also took genetic testing and found I have some MTHFR mutations plus some other things, including a supposed indicator that I'm sensitive to caffeine, reaffirming my earlier findings. I've also cut out folic acid completely. However, I take these test results with a grain of salt, since there is mixed evidence of SNPs actual being of importance.
I've also experimented with probably 30+ supplements. I'd say more than half the time, my brain fog worsens when supplementing. I've finally settled on just melatonin and glycine at night. With these, I actually remember my dreams, which I take as a good sign.
Anyway, I've done very little blood testing recently, but in the past, a standard blood panel came back normal. Again, would love to hear what testing you had in mind.
I have all manner of stomach/digestive issues on top of the brain fog stuff, although that is generally related. I have definitely spent thousands of dollars on supplements, tried probably hundreds of them. I want to get the TrioSmart breathe test to figure out specifically what my intestines are infected with, I want to get as comprehensive a food sensitivity testing panel done as possible. There are also lots of supplements that I know would help me that are not available where I am, for example bismuth (pepto bismol).
In your case, I would recommend getting some L Glutamine power and taking a bunch of that in the morning and at night. That would likely fix your brain fog or at least go a long way. Best resource I've found is brainhealthbook.com . What is your email? I'll reach out and we can discuss ideas, theories and strategies further.
Following the below diet changed my life for the better. Like night and day. I was able to get back into the software industry. I remember the summer that I started it, literally every week I felt like I was 10% smarter. And I also was regaining memories that I had completely lost prior to that. Kind of surreal.
These days I piled up on veggies (my system just couldn't tolerate most sugar/salt/fat heavy food in stores). That said I found that 80/20 green/carb is a sweet spot. I'd bet a few dollars that vegetables help your system process the carbs too so it's less an issue than normally (according to the 'too much carbs is bad' trend).
There are a lot of different sources out there. I recommend you read a few and start a journal to track diet and symptoms and figure out what works for you as an individual.
The paper Restoring metabolism of myeloid cells reverses cognitive decline in ageing [1]:
> Here we show that in ageing mice myeloid cell bioenergetics are suppressed in response to increased signalling by the lipid messenger prostaglandin E2 (PGE2), a major modulator of inflammation. In ageing macrophages and microglia, PGE2 signalling through its EP2 receptor promotes the sequestration of glucose into glycogen, reducing glucose flux and mitochondrial respiration. This energy-deficient state, which drives maladaptive pro-inflammatory responses, is further augmented by a dependence of aged myeloid cells on glucose as a principal fuel source. In aged mice, inhibition of myeloid EP2 signalling rejuvenates cellular bioenergetics, systemic and brain inflammatory states, hippocampal synaptic plasticity and spatial memory. Moreover, blockade of peripheral myeloid EP2 signalling is sufficient to restore cognition in aged mice. Our study suggests that cognitive ageing is not a static or irrevocable condition but can be reversed by reprogramming myeloid glucose metabolism to restore youthful immune functions.
A study from 2014 [^1] indicated that prolonged fasting (2-5 days) caused the regeneration of immune cells and "reversed age-dependent myeloid-bias in mice". I don't have the knowledge to fully understand the implications of this, but it seems it supports reports that fasting has positive effects on aging-related brain degeneration.
I fast semi-regularly (I'm just finishing up a four-day fast), and it amazes me how often we by default reach for something (e.g. pills) to put into our bodies to solve or improve something, when sometimes the answer is to _not_ put something (i.e. food) in it (at least for a little bit). It's also a great exercise in self-control and discipline.
There is a great book on all kind of benefits of fasting (it provides also ideas for diet on periods of normal eating): The Longevity Diet by Valter Longo (legitimate scientist).
This reminds me of Rapamycin, an immunosuppressant that also makes most animals live much longer — something longevity hackers are experimenting with now.
I just got out of a rut that had me a year down, wellbutrin helped a bit but couldn't go on longer than a few months because of the resulting insomnia, and while it didn't really lift the brain fog, it worked very well with the panic attacks I was having from ADHD meds or coffee (after years of using them, lately with diminishing returns)
When I went back to the basics done right, and stopped doing experiments on myself like fasting or energy drinks at certain times, everything slowly went back into place, it only took about 3 weeks and compounding effects after a few months. Basically, consistency was key:
Start the day with aminoacids + b-complex, water soluble vitamins on empty stomach work better.
Then a protein breakfast, like 4 eggs and some greens. Eggs are a good source of choline. Only now I'd pop a vyvanse, less aggressive/spiky effect but also less anxiety and lasts longer on a neutral stomach.
Replace coffee with matcha. Has the caffeine + theanine for relaxation, and slower release. Happier gut as well.
Extended lunch break: small meal but time for a walk with my gf, light exercise, call a friend or errands, then slowly transition back to work and finish the day.
For dinner get your Omegas and Vitamin E (lowers inflammation), fat soluble vitamins do better on a full stomach.
Before bed maybe some Melatonin and Magnesium.
About supplements for brain fog, maybe try some extra B1 (Thiamine, there's also Sulbuthiamine), Ginseng.
Get tested for anemia, even if the basic blood panel looks OK, just get a video doctor to hand you out an exam order for the usual suspects like ferritin, serum iron, plasma electrolytes, b6/b12, d, c, folate. If it's low but not anemia-level low, you could supplement, it seems pretty common with iron. Low Vitamin D won't really change with those 800 IU pills, get those salts that have 50.000 IU once per week then retest after a month.
From the paper: In ageing macrophages and microglia, PGE2 signalling through its EP2 receptor promotes the sequestration of glucose into glycogen, reducing glucose flux and mitochondrial respiration. This energy-deficient state, which drives maladaptive pro-inflammatory responses, is further augmented by a dependence of aged myeloid cells on glucose as a principal fuel source.
- I wonder if fasting helps reduce this.
I had brain fog since college and I am now 31, I started running 1 year ago, and I am now running 50+ km per week. Haven't had even one brain fog ever since, feel like iron man everyday.
article itself mentions issue of hoarding glucose instead of using it. elevated HR via exercise basically forces glucose to be used so. not surprising at all.
Looks like they've done this with mice and with cultured human cells.
> If their findings in old mice and in human cell cultures apply to actual humans, they could presage the pharmaceutically managed recovery of older people’s mental abilities.
Lately I haven’t really been too convinced about the benefits of fasting. While fasting is probably good, exercising regularly and putting a consistent stream of good nutrients into your body is still probably better at preventing all kinds of aging. Fasting is just more accessible to those who do not have access to steady source of good nutrition, and it takes no real effort beyond not eating.
It's all about autophagy. You can trigger it with diet, but it's way easier to just do fasting 7 days every 3 months or 3 days every month. (obviously exercise and good diet is also important) https://www.healthline.com/health/autophagy
I started to hope that someone is going to do exactly that. What if we really try to create the most healthy, long living mice? Could we do it? How much healthier could it get? If the answer "several orders of magnitude", the risk averse zeitgeist towards human medicine might change.
Because an awful lot of this goes over my head, can anyone tell me if these findings could potentially apply to all auto-immune diseases? Or just those related to the brain?
Often one of the first symptoms that cause people to seek a diagnosis.
Have Sjogrens. Cognitive decline is a real issue for me. Treatment and lifestyle changes make a huge difference.
Basically controlling inflammation becomes your life. Or you won’t have much of one.