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I had an autoimmune disease, then the disease had me (2013) (newyorker.com)
215 points by daegloe 218 days ago | hide | past | web | 138 comments | favorite



I have an autoimmune disease; type 1.5 diabetes, formally called LADA (Latent Autoimmune Diabetes in Adults). I'm insulin dependent, like type 1, but the disease didn't manifest until my 40s, like type 2.

I suffer from moderately severe diabetic foot pain. My doctor prescribed some medication that provided marginal, at best, relief. About a year ago, I had a persistent fever. I took some aspirin to knock down the fever (I almost never took aspirin before that) and discovered that it provided significant relief from the foot pain. More recently, I had a bad cold, and I took some cold medicine that includes acetaminophen, something that I also almost never took before that. It seems to help even more than aspirin. I am wary of taking acetaminophen regularly, because of the warnings about liver damage, but it is something I am considering for those times when the foot pain is severe.

What I would recommend for people suffering from these kinds of problems is that they embrace the idea of Quantified Self. Start keeping a diary of everything. The things you eat, the things you do, and the symptoms you experience, in excruciating detail. Then start looking for patterns and correlations. Put the data into a spreadsheet, generate charts. Learn statistics, learn about correlations. Learn Bayesian Probability. You may be able to find the specific triggers that cause your symptoms, and maybe the things you can do (or avoid) to reduce your symptoms.


Not sure the causes of the foot pain, but if you haven't use many NSAIDs before, check out ibuprofen. It's safer than the other drugs in its class and performs better at most functions including inflammation. The major benefit of acetaminophen over ibuprofen is that ibuprofen can cause upset stomachs more easily whereas acetaminophen is less likely to do so.

I'd be careful and consult your doctor about the pain though, since any NSAID can cause complications for your body if you have specific issues if the NSAID is used over a long period of time.

Here's one article about NSAID use and one article about the FDA warning about long term usage of NSAID:

1: http://www.vox.com/2015/8/17/9165189/best-painkiller-tylenol...

2: https://www.nytimes.com/2015/07/14/science/experts-urge-spar...


The risk for liver damage related to Tylenol is mostly related to chronic alcohol use. Safer guidelines in the US have decreased the maximum from 4 g in 24 hours to 3 g. This is still 4 doses every 6 hours.

NSAID use gets iffy in diabetics. Especially if you've had poor blood glucose control, your kidneys may have been damaged over time.

This is a discussion to have with your primary care provider.


If you do take ibuprofen, be aware that you probably need to also take extra B vitamins. It is known to deplete a specific B vitamin. A quick google suggests it is B12, but I suggest you do some research of your own to confirm that.

I took daily ibuprofen for years. It is commonly prescribed for my condition. My need for B vitamins plummeted when I finally got off of it.


It looks like it lowers levels of folic acid, which is vitamin B9: http://pennstatehershey.adam.com/content.aspx?productId=107&.... Looking at the other articles for B vitamins on ADAM, it seems that only folic acid is affected.


Good work!


Do be aware the ibuprofen and the like can be incredibly hard on your stomach. Ibuprofen caused gastroenteritis so severe I went to the ER due to the excruciating pain. Apparently daily/frequently usage is often associated with gastroenteritis. Which sucks because it is effective. I recommend taking natural antiinflammatories instead. There are quite a few which are effective. Also, ranitidine (commonly suggested for stomach acid issues) is very well tolerated by the stomach, cheap, and really effective at controlling inflammation.


Firstly, do not self-medicate. And do not take online medical advice : go see a doctor.

The reason you have foot pain is that your blood is thicker : it has a harder time flowing further away from your heart. This has 3 consequences, not just one.

1) is feet, or other extremeties, not getting enough oxygen. This will result in weird tickling, then numbness, then necrosis, which will hurt.

2) is nerves deteriorating or dying in your extremeties due to repeated instances of 1. This can lead to pain upon the slightest stimulation. Someone touches your feet and you feel like a needle has been stuck entirely through your foot.

3) is too much sugar in your blood. This is why it's thicker. This will result in a big boost to whatever bacterial infections you already have in your feet (we all have a few).

If you must take online advice then please:

First, a number of things have now become really stupid. First on the list: you need loose fitting shoes now. Note: not sandals. Sealing your feet in "flexible" sport/running shoes can worsen your condition rapidly, especially if you lace em tight as well. Likewise walking around barefoot is stupid, especially outside. You need comfortable and fresh socks at all times, and you should not walk around without having your feet covered, given what can happen if you hurt your feet.

Letting your feet freeze, even just to a point that would be fine for normal people, has just become stupid. If it happens anyway, fix with water. Start with ever so slightly warm water and slowly raise the temperature. What works best is having warm water flow over your feet. The point of this is to warm the blood going through it, so despite how it feels the first moment that this actually has an effect is 2 minutes after you've started doing it. You want to do this for 4 minutes absolute minimum, but 10 minutes is certainly better.

Second, when you feel this happening : change your posture. The easy way to provide relief is to lower pressure, and you do that by making sure the vertical distance inside your body is minimized, and nothing is pushing on anything else (e.g. crossed legs, sitting on your feet or knees, ...). If possible, lie down, if not, at least sit down. Change position regularly and move.

Aspirin can help, but go easy on it. You might consider having the lowest possible dosage you can find, and just taking it constantly. Needless to say, you should discuss with a doctor first. Be careful about mixing alcohol and medication, even in small quantities.

It may also be good to have a "training regimen": stretch your feet every day at least. Move every toe forward and backward a few times using your hands and bend the foot every way it'll go a few times.

Thirdly, if you don't keep your feet impeccably clean, I guarantee you you will regret it. Warm (not hot, warm) water, twice a day, at least. If your skin dries out skip the soap one out of the two times, or find a better soap.

Fourthly, any slight wound to your feet can infect like you wouldn't believe and result in amputation (or death). If your cat playfully and slightly breaks the skin on your feet, and it doesn't even hurt, you still have a doctor clean it and prescribe antibiotics for a day or two. Serious wounds need to soaked in alcohol (medical alcohol, vodka works but is not as good, so only for emergencies). You go back for checkups.


I often see the advice to go see a doctor, but I honestly think it's the rare doctor that is helpful beyond antibiotics and blood tests.


For things that can be handled by quick research online, and things that don't necessarily need a doctors approval (e.g. Should I take ibuprofen or acetominophen?), seeing a doctor is overkill. But for most situations, it's not that simple and a doctor, especially one who knows your medical history, would be very useful in determining if something is good or bad, what the risks may be, what complications something may have with a medication, and so on. This is especially true for a less common disorder or disease.


It's a little strange and seemingly lacking in self awareness that you say don't take medical advice online but then explain things about why the foot pain is the way it is, and what to do about it, in great detail.


+1 on the Quantified Self concept. I lost a daughter to cancer. The disease has something like a 5% survival rate. We were at a top tier children's hospital with a doctor who handled more cases of this disease in clinic than anyone else in the country. Still most of the time nobody knew what the fuck was going on. So I started a log in a spiral bound notebook. In 15 minute increments we jotted done notes of what was happening and her reactions. In doing so we could clearly prove to the staff which medicines she was reacting too and how. This greatly improved her quality of life, which was all we could hope for.

I have severe pain from several back injuries that has taken me years to recover from. Following a similar approach of quantified self has enabled me to discover what the triggers for my pain are and how to manage them physically and medicinally.


Have you tried medical cannabis for the pain? My wife has an autoimmune disorder and uses the raw cannabis - which has THCA, a precursor to THC, which doesn't get you high but greatly helps her pain and inflammation caused by her over active immune system


How long did it take to get foot complications in your case and how good was your diabetic control? I'm also "late onset" type 1, (diagnosed at 27). But they don't call it LADA. The weird thing is that they could not find any antibodies, but since my C-peptide level was very low at the moment of diagnosis they call it Type 1.


Would you be willing to discuss your logging methods? I'm putting together a group of people doing self-tracking for autoimmune conditions in Berkeley (or remotely), and I'm trying to get the logfile format correct. (Free software project) josh@codeselfstudy.com


I'd say talk to your doctor that you are taking certain medicine just to make sure the doctor knows about it. Beware of placebo effect (which might be good in your case).


Have you researched the ketogenic diet?


It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex.

2 years later I grew giant, hard skin patches on my knees. My fingernails started detaching. I could live with it, although as a gym rat I needed to make sure my knees were wrapped since doing anything on my knees ripped the skin open.

My fingernails continued to go through phases of detachment and normalcy, and I've lived with the limited skin problems because they were limited. But just in the last year I've grown giant scaly patches up and down my back, and now there are spots growing, expanding across my forehead and nose. I can see how people look at me now, there's something clearly wrong with my face.

I'm terrified. I've always had general fatigue that seemed to match flareups in my skin. While the angriest, spreading psoriasis + fatigue comes in waves, each wave seems worse than the worst that came before. I'm scheduled to see a dermatologist in a few weeks (in Canada, I've had to wait 3 months just be able to have this appointment) but my deepest fear is that I'll be told this is my life now. Even though I know that's the answer, I know there's no cure for psoriasis.

I don't know why I'm typing this, except perhaps that I realize that both the author and I are on the same hunt, and not finding much of anything that can help us feel like we're more than 80% (or 60% or 40%) of the person we were as teenagers. But perhaps there is hope that I'm seeing more articles like this, autoimmune diseases are getting more attention.


My doctor in NYC was the first to bring to my attention the emerging link between autoimmune disease and microorganisms. After 20 years of managing with medicine and hitting rock bottom 2 years ago, he encouraged me to consider drastically altering my diet.

I started eating autoimmune-paleo (like the author) and anti-fungal. The improvement has been dramatic and life changing. I'm now off all medication. I still have a bad day every now and then, and I may need to revisit the meds at some point down the road. But I'll tell ya, after years of feeling hopeless, it's amazing to take control and regain some sense of normalcy.

If you haven't examined your diet, I would strongly encourage you to do so.

Please feel free to reach out to me using the email address in my profile. That goes for anyone here.


Dr. Mercola swears by the eating "pure" approach to solving many autoimmune diseases: no prepared food, no refined sugar, food made from scratch from the highest quality ingredients (organic, or as close to it as you can get). One of these days when my arthritis gets too bad I'm going to give it a shot. It's expensive, and a massive change in lifestyle (no more fast food! Or restaurants!), but I can see why it'd be so effective.


Mercola is one of the worst promoters and profiteers of pseudoscience.

https://www.google.com/amp/scienceblogs.com/insolence/2012/0...

Here Mercola is ranked in the same "pure garbage"category as the Food Babe. http://www.nature.com/news/science-journalism-can-be-evidenc...


Dr. Mercola being an absolute nut aside, what does "organic" have to do with the composition of the produce itself? I can perhaps understand wanting to avoid antibiotics in meat and animal products, but all organic fruit/vegetable production does is prohibit certain types of fertilizers and pesticides (while allowing others), which don't impact the composition of the final product anyway. It has an impact on the environment, land use, and the cost of food production, but the food is chemically the same. So how would it have any health benefit or produce a "purer" product?


>> It's expensive, and a massive change in lifestyle...

I don't think it's expensive and not so much of a difference in life style. I went on LCHF diet (low carb, high fat). I don't even miss sugar, or pasta or bread, I don't need it. Once I had a cheat day every 10 days, but now I don't need this stuff. I enjoy amazing 0 carb deserts, that are sweet too. Plus I am lucky to have a gf who makes amazing 0 carb cakes. For breakfast I often eat egg omelette with spinach (in leaves), with sour cream and butter. It keeps me full for a long time. My energy levels are through the roof. On LCHF you can also eat out, just don't eat starchy foods, stick to fat and proteins. I think this is the easiest diet to try and tweak later.


This one? https://www.psiram.com/en/index.php/Joseph_Mercola

Watch out! Looks like a scam artist that sells voodoo.


I want to echo this advice. One of my closest friends was diagnosed with Crohn's Disease in his teens, having surgery not long thereafter. He began researching for ways to get it under control which led him to anecdotal evidence on the benefit of adopting a revised diet.

He has been vegan for almost a decade and has had no major problems since.


Mine started when I was 28, at the inside my left eyebrow, then my left eyelid. Then also my scrotum and then my scalp. STD tests negative. Dermatologist said "seborrheic dermatitis" and gave me a shampoo. Spreading to my elbows and knees it finally presented, and was diagnosed, like classic psoriasis.

Lulls and flares. Topical medicine was like a treadmill, barely containing what I had and not preventing any new areas. Then mild fatigue began with the flares. Hard to get up some days. Reminded me of the major depression I had conquered in a previous life. Blood tests were fine.

Then knee pain. "Just arthritis - you're 31 but getting older." Get some orthotics, do some PT. Tailbone pain. Fingers too stiff to get dressed. How much Naproxin can I take safely? Orthopedists just thinking of ways to treat pain - killing nerves or opioids. The cyclic nature makes it so that just as it's getting unbearable, or when I can finally see a new doctor, everything is pretty much fine.

A new dermatologist finally suggests I see a rheumatologist that it could be PA. Looked for the best in my region, did a lot of tests and at least I finally had a name for this. Psoriatic Arthritis. Took Otezla which helped my joint pain, gave me a lot of migraines, and seemed to be a multiplier for the topical medication, but after 9 months it was not keeping up with the flares.

Now I'm taking Humera injections instead for the last 3 months. My skin is almost clear and I haven't had any flare ups. The potential side effects are scary. Hoping to become more informed and find some alternatives to move to. For the first time in 8 years I feel almost normal, but my hunt is not over. Right now I've made a deal with the devil for some normalcy - I believe a lifetime of this medicine could kill me. It would also cost $33,000 a year without my great job and insurance.

The article's point that an umbrella autoimmune specialist is needed is so true. For me the closest I came was my rheumatologist - she knew more about psoriasis than any of the dermatologists I've been to.

Good luck on your journey.


Going through something very similar. Started 6 years ago when my lips became inflamed out of nowhere. Lasted a confusing week and then was gone like it was never there. About a year later, it came back again a little bit worse and with some discharge. This pattern continued, sometimes only a few months between outbreaks, and sometimes over a year. New symptoms started coming with each outbreak. At this point I can feel it coming on and manage it with a steroid cream, but now my ears, eyes, nose, and other parts of my body have similar symptoms. The worst part is that it's incredibly painful, to the point where I have to leave work, but really doesn't look that bad, so it's hard for other people to understand what's happening.

I've been to 5 different doctors, a general internist, 2 dermatologists, an ENT, a gastroenterologist, and have gotten 5 different diagnosis. It feels pretty lonely, but I'm glad to see your story here, and that this article is shining more light on these kind of ailments.


I have an autoimmune disease and way too many friends with them as well, so I'm very familiar with the seeing countless doctors. Most people ended up getting a proper diagnosis at either a rheumatologist or neurologist.


You and everyone else in this thread should know that "immunologist" is an existing specialty. Find one. Make sure it's not just an allergist, but an academic type with multi-system hospital privileges.


Any tips on finding one? I'm assuming you don't mean infectious disease specialist. I'm familiar with most of the allergists in my area and none are immunologists.I just did a search on google and I can't seem to find any in SoCal.

Are they clustered somewhere in the country? Like how all the geneticists seem to be on the east coast, and the limited geneticists here all seem to be in children's hospitals.


+1 for the Immunologist recommendation.

That's where everything finally came together for me.


I encourage you to try RAW medical cannabis. The precursors in the raw plant to the cannabinoids that get you high, such as THC, are the acid form, such as THCA. They don't get you high but have been very pain relieving for my wife's constant inflammation. The heated form (where THCA is converted to THC) is also helpful, but id you really dont want to be high, find strains that are low in THC/A and richer in e.g. CBD/A Also it can be done at a low temperature in the oven or in a canning jar on the stove (called decarboxylation).

I don't know your pain but it's been super helpful for my wife.


There are now very effective treatments for psoriasis to the point that most patients can be clear or nearly clear of the disease. These range from UVB light therapy to drugs such as methotrexate and ciclosporin and a growing number of monoclonal antibodies such as adalimumab. Clearly these treatments do have some small risk attached so there is a trade off between how greatly the psoriasis is concerning you and the (small) potential for side effects. You can discuss this trade off in detail with your dermatologist.

COI: Dermatologist


While YMMV, from a patients perspective, with severe psoriasis and psoriatic arthritis, you want to get to biologics as quickly as your healthcare system (or budget if you have fu money) will allow.

Insurance companies love methotrexate because it is cheap. It has a far higher NNT than the biologics, is less effective at clearing psoriasis, and has horrible side effects.


From what I've seen of psoriasis and psoriatic arthritis doctors will prescribe basic emollients and moisturisers but do little to find long term cures on an individual basis.

The best results I have ever seen in getting rid of psoriasis have been sunlight and enstillar foam. Almost to the point of complete repair.

It is important to note what flares things up for you, stress is a huge factor in severity of psoriasis, diet (red meat, dairy, sugar) also can really impact it.

Keep searching for those improvements and share your results.


That's interesting, in my mid 20's the area above my ears also became itchy and flaky, inflamed, just like you describe, and it lasted for years. My hair started thinning out in that area as well, and I was generally not feeling well. In my early 30's I started noticing correlation between eating wheat products, especially anything with white flour, and the symptoms flaring out/getting worse in the next few days. I started removing all foods with gluten from diet (which I found pretty easy actually, basically no more bread and stick to rice, sweet potatoes, beans and fruits for starch) and the symptoms disappeared almost entirely over a few weeks. I started supplementing with daily vitamin D and started to feel even better. I would experiment with removing gluten from your diet and vitamin D supplementation to see if the symptoms improve over a 2-3 week time frame, if you haven't tried already.


Hi orbitur,

I too used to suffer from allergies, psoriasis, arthritic joint pain. But I cured mine without any drugs. Doctors were of absolutely no help whatsoever. They have a better living through chemistry approach to "healthcare". I figured out the root cause through many years of suffering and experimenting and trying everything I could think of once I realized that doctors are completely useless for anything but acute medical issues.

Let me give you a short history of my health history so you can understand how I arrived at the solution. At 6 months old, I had severe hay-fever. This continued until I figured out the root cause. At 10 years old I developed psoriasis, first around my anus, then my elbows, knees, later on my ankles (anywhere where there was rubbing, or if I leaned on my elbows, or kneeled on my knees). It would form hard white scabby formations that itched like crazy and would bleed. Later in my 20's, I had patches under my hair, under my toenails (the doctor's thought it was a fungal infection), and on my tongue.

Around 30, I started to develop severe constipation. Had internal intestinal bleeding, and the constipation got so bad I started having panic attacks. My body was in a constant state of heightened adrenaline and I had adrenal fatigue. I was constantly tired, needing constant naps, but I couldn't sleep more than a couple hours, so at night I had insomnia. I had a constant headache, and brain fog. Sometimes I couldn't even remember by friends names.

Throughout my doctor visits, I was prescribed allergy meds. Cortisol for the psoriasis (which I'm allergic to). Coal tar cream did help for the psoriasis, but it just got rid of the itchy scaliness and then it didn't bleed. Later when I had panic attacks, I was put on paxil and ativan. But I couldn't function, I couldn't do my job (software engineering/management). With the severe constipation, not going for 7 days or more. I was told to take laxatives, Metamucil, eat more fiber (even though I had upped it and it seemed to make my problems worse). The last gastroenterologist after doing, upper GI, sonograms, blood tests, etc told me I needed to see a psychologist. Even though I knew my problem was my body was causing stress, not that stress was causing my body issues.

Sometimes it would get better for a while, then it would flare up all over again. My life, my entire life had been miserable. I never smiled, I was angry all the time. But it was my normal, and I never knew that most people didn't feel this way. I quit my last salaried job in 2011. And it was then, that I finally figured it out. I quit to work on an iphone game. And now, without all the structured living (going to a job M-F, living a set schedule, wake up at a certain time, eat at certain times, go to bed at certain times) I began to experiment. I slept when I was tired and could, I worked when I was alert. But I also began to cook a lot. I started making all sorts of breads, muffins, cookies, experimenting to make the perfect pizza crusts. And that's when I noticed that if I ate a lot of wheat products my symptoms would flare up. Sometimes to the point that I would just lay in bed for a week, getting up to eat and use the bathroom, but in constant pain. And to top this off, around 10 I had some rye bread it made me so sick. In my 20's, I had to stop drinking beer, because it made me so sick. Even made my forever stuffed up nose worse and causes a sinus headache. A headache which was the source of the brain fog, which I would realize later.

It was around this time I kept seeing the gluten free diet craze. Which I paid no attention to, because my symptoms were the exact opposite. Celiacs have constant diarrhea, I had constant constipation. But at this point, I was desperate, doctor's were utterly useless. And I decided, what would it hurt to try to go on a gluten free diet? So I went on a strict diet of meat, lots of fat and vegetables, I also eliminated all dairy. No packaged processed foods, gluten is hidden everywhere. After about 6 weeks, I felt amazing to the point of euphoria. My digestion starting working again. And oddly my psoriasis started to clear up, I had not expected that at all. After 6 months all of the psoriasis was gone, completely gone.

This worked for a year or two, but I din't feel as good as I did sometimes. And I noticed all grains had a similar but weaker effect on my constipation. So I eliminated all grains, and my allergies vanished. Over the years if I eat a small bag of frito's my allergies will come back within 24 hours, but after 3-4 weeks they will disappear again. And I can go out and enjoy the smell of freshly cut grass, flowers. Ragweed can be in hyper pollinating mode and I might have to blow my nose a couple times instead of my eyes turning red and burning and having a constant stream of snot running out of my nose.

But my hip hurt, my knees, elbows, and fingers ached from arthritis. And having seen the miraculous effect that food had on my other conditions I searched for a solution. I began to notice that if I had a big plate of potatoes, paprika chicken, hot peppers it seemed to flare up. So I eliminated all nightshades. And after about a month my arthritis went away. I no longer was constantly popping my knuckles, and popping my vertebrae when I woke up in the morning. In fact I can no longer pop them, as they don't get stiff.

I'm going to be 42 this year and I have never felt this good in my entire life. I sleep like a baby, my mental sharpness and ability to quickly and efficiently hold big problems in my head and come to solutions is beyond amazing. Since figuring out the gluten problem, I started my own company. I have a product under development, but I'm so swamped with consulting work that I have not had much time to work on it. I work 100% from home. I am filled with profound joy and happiness. I no longer feel anger, stress. I have no problem striking up conversations with strangers. I'm a completely different person.

Throughout the years since figuring out my problem, I have accidently eaten gluten, grains, nightshades, dairy. And the sypmtoms will come rushing back. But if I avoid the foods (poison), after 2-3 weeks I'm good again. I no longer eat out, I no longer even eat what other people have made special for me, as that is a source of accidental exposure. I make all my food 100% from base ingredients. Unprocessed meat, fresh vegetables, fresh fruits. Lots of Extra Virgin olive oil and animal fats. In fact about 65% of my daily calories are from fat. About 10% of carbs from fruits and vegetables, no processed sugar. I was never fat, but after eating like this I lost so much weight 155-> 131. That I upped my food intake, as I was too skinny. I have to work hard and sometimes force myself to eat an extra meal to maintain the 140 that eventually got back up to. I sit at a desk all day, don't exercise but have 6 pack abs. Every time my ribs start showing too much I have to eat an extra meal for a couple days. So I also discovered why most people are fat.

I have since run across a famous quote, which would have meant nothing to me before, but is a fact of life for me now.

Hippocrates — 'Let food be thy medicine and medicine be thy food.'

If you want advice on how to try this experiment on yourself, send me an email (cmerinsky at gmail.com). After all, what do you have to lose?


I've read hundreds of accounts like this, and have a variation of my own. What's irked me is that no one treatment works for everyone, and since there is no public record of each individual's medical history or treatment protocol, as a community we don't learn as fast as we could. I even built an app (medwiki.co) that attempts to collect data for two common conditions, expecting that patients would want to share their experiences, ultimately leading to a data driven approach to non-mainstream treatments (including diet, exercise, but also other treatments not recommended in current medical guidelines).

The flaw in my thinking was the word "patients" - what I've found is that those in the grip of a bad condition rarely have the ability to altruistically contribute data, and by definition have not yet found a treatment that works. For those lucky enough to find a cure, they are not in patient communities any more, nor are they reachable via keyword advertising and the like.

Gathering data to find out which protocols work for what requires the medical community to share medical histories and treatment outcomes like software developers share code. Alas, they lack the culture and data collection discipline to do it - I've tried. Even large entities that pay hospital groups for anonymized data have trouble getting good outcome data due to poor data collection practices and the tendency for patients whose treatments failed to just leave for another doctor.


ChristopherM, this mirrors my journey/experience as well.

I never took diet quite seriously and dismissed most anecdotal connections between gluten, grains, sugar, etc. and health.

But at 40 yrs old, and after nearly two years on an autoimmune paleo and anti-fungal diet, I've never felt better.

I wish more people suffering with autoimmune conditions were aware of this natural approach to healing and recovery.


Sounds like you've tried the topical approach. Doctors can also prescribe systemic immunosuppressant solutions as well, though. Often orally. You may be ready for that step. Even then, there's another step past that with drugs that can only be injected, like biologics (often something like an antibody that shuts down the human inflammation system). There are big trade offs in expense, delayed action, side effects, etc. in all these, so don't feel bad about starting out with topical. It was worth a try, as they say.


Eat an Autoimmune Paleo diet for a month. It works very well for me and a lot of other people.


Probably the most common skin condition in humans is https://en.m.wikipedia.org/wiki/Dermatophytosis , aka ringworm, aka athelete's foot. I'm guessing by this point you've eliminated that as a possibility by treating with over the counter topical antifungals?


I was also diagnosed with Psoriasis around five years back. I went through the same cycle of meeting various doctors and therapists (Alternative medicine). The symptoms would go away while taking medicines but would come back once I stopped. So I made a decision that I will do whatever it takes to keep me generally healthy. I eat what my body loves to eat. I experimented with various diets but finally settled on this philosophy that worked for me. If you listen closely, the body tells us what it likes to have at any moment. Then I took to exercise and running. I run a marathon or at-least a half-marathon every year. I know that this disease may never be healed but 'am happy to keep it under control. I take it in a positive manner that this disease keeps me on my toes to exercise and eat right. Thanks and good luck!


Have you tried a low-carb diet before, out of curiousity?

I ask because what you described as symptoms mirror many of mine (but mine were not nearly as severe). I found that prior to modifying my diet I'd have "random" flare-ups that I could not attribute to anything environmental -- or so I thought.

I started a ketosis diet for weight-related reasons, but quickly found out that the skin issues I'd been experiencing abruptly ceased.

My hypothesis is that I have a specific sensitivity to a modern wheat strain. I'm not sure which one it is yet, but that's going to be my goal over the next year.

My experience is my own, so I don't want to give hope if my situation is different, but the diet change is doable for a short period of time to test a hypothesis.

Shoot me a note if you want to discuss further. My contact info is in my profile.


>2 years later I grew giant, hard skin patches on my knees. My fingernails started detaching. I could live with it, although as a gym rat I needed to make sure my knees were wrapped since doing anything on my knees ripped the skin open.

Shouldn't you at that point, or at least now, go to the doctor, or several doctors, again?

It's not the "3 months for the appointment" that concern me as much as the 2 years with increased symptoms.


I skipped over it but I did go back to a GP. Got more prescriptions for hydrocortisone+dovonex, and that if it should get significantly worse, to line up a referral to a derm. After that, I had a relatively stable 5 years where my fingernails cycled and my knees and scalp just persisted at the same level. I hesitated going any more since he didn't seem to care all that much and again, I could live with it. It was workable.


My father went through the same exact experience with psoriatic arthritis. Between dieting and medication he's been able to handle it, but it's always there. He can't really grip tightly with his hands anymore. It sucks, but I hope it helps to know there are people out there successfully dealing with the same struggle.


Yup. Plaque psoriasis here. Started on my elbows when i was 18ish. Now it's pretty much everywhere, but hands and face are all that's visible in public.

The treatment ladder is pretty interesting. UVb is step one, i always felt a little silly about going in to the dermatologist for a tan. That had no noticable effect for me, but it does help some people.

The topical cremes are fairly effective for me, but it's tough to get pharmacies to give me enough. They show up with a little tube, and i have to explain that's like 3 days worth - covering the whole body 2x a day takes, like, a lot. I need nine more and i'll see you in a month buddy. And of course they thin the skin. I try not to overtreat, no creme if there's no redness. but i'm sure there are spots with consequences.

The generalized immune suppressants are pretty scary to me, 20 years of methotrexate seems untenable. I could see perhaps a short term 3 months ish run to get it under control, then touch up with the cremes.

I like the idea of the biologics. humera, stelara and enbril, are the big ones i think. narrowly targeting just the inflammation response part of my immune system seems a little less risky than the broad suppression of cancer drugs.

I dunno. it sucks. I try to use the lightest touch to get by in the hope that something better will come along, without doing too much damage right now.

Talk to your derm, of course, but for me just a really good moisturizing creme a few times a day will soften up those hard patches so they don't crack so easy. I try to keep up with the vanity treatments, hands and face, to banish the redness all the time. I tend to not worry about the rest until it gets pretty itchy - moisturizer helps keep the itching down quite a bit for me.

Anyway, i go through phases. I'm sure this summer i'll try to hit everything hard for two solid months. Maybe i can get back to a casual maintenance mode.

it sucks. you're not alone. I'm not exactly in your same boat, i'm just hoping it does not spread to my joints. At that point i think i'd have to go with a cancer drug or injectable. hopefully there will be better drugs, or the current drugs will be better understood, before that's an issue.

It sucks it can't be fixed. My least effort to make this tolerable probably isn't ideal, i'm probably over weighting the risk of side effects and under weighting the damage done to my skin by just letting things go. but you know, it's a thing. it's a thing i can't really do much about so i try not to let it dominate my life. There have been times when it really controlled my thoughts and fears. Those times suck, you'll get through them.


A couple of years ago I was researching emerging Rosacea treatments and if I recall correctly, Potassium Dobesilate was found to clear up psoriasis plaques very effectively.

I'm at work so can't verify that, but might be an interesting read for you. Never give up hope, there's a lot of work being done in this area.


Some good news. There are dozens of new drug approved by FDA addressing the auto immune illness. The problem is they are expensive, thousands of dollars per shot for every couple weeks. Hopefully the competition will drive the cost down.


Do you know the names of any of these?


I assume they're referring to biologics, another name for monoclonal antibodies such as adalimumab (Humira), infliximab (Remicade), etanercept (Enbrel), ustekinumab (Stelara), etc.

Most of these are TFA inhibitors, but there are some newer ones that target other things, such as ixekizumab (Taltz) and brodalumab (Siliq), both approved very recently.

Common to biologics is that they're all fairly new, so their long-time safety is not established. They are more precisely targeted than immune-system therapies such as methotrexate (a chemotherapy drug that also works on psoriasis), but they do interfere with your immune system in scary ways. There's evidence that they increase the risk of cancer as well as other diseases. Brodalumab has been associated with an elevated risk of suicidal ideation and behavior (!), so there's that.


> There's evidence that they increase the risk of cancer as well as other diseases

All drugs can have negative effects, but in the end it comes down to what's the risk/reward ratio. If someone is in constant pain and barely can do anything it really doesn't matter if you die 5 or 20 years down the road to cancer when you get x years to live somewhat normal life. Life in extreme suffering can be worse than death. This is based on personal experience.


Methotrexate is the most commonly used drug in Scandinavia when cortisones, protopic etc doesn't work. They have lot of people having these kind of issues. Good thing with methotrexate is it tends to work and it's cheap. Obviously consult your doctor before making any decision.

Humira etc is very expensive but works for lot of people that other drugs don't.

http://www.webmd.com/drugs/2/drug-3441/methotrexate-anti-rhe... https://en.wikipedia.org/wiki/Methotrexate


Sorry for the late reply. Didn't check comments.

Some of the old ones are Humira and Enbrel, which have been out for quite a while (since 2000's). The newer ones are Cosentyx and Taltz, which has a higher cure rate. There are dozen of others that I don't remember. Just search for biologic for autoiummue. More drug companies are in the process of getting more drugs approved.


No cure now. We can push for closer, more detailed, more personal medicine, more open and largescale too. That's the only option for people outside of the already known solutions.


What do you eat? You should try a restrictive Autoimmune diet.


The good news is that while psoriasis currently has no known cure and is a life-long disease, the available treatments are generally quite effective.

As with anything, the success of your treatment depends a lot on your doctor. The best way for a psoriasis patient to get treatment is to find a good dermatologist. Don't settle for a doctor until you've found one that seems super qualified. Even then, make sure you ask lots of questions and explore every avenue; doctors just aren't very good at giving you the full picture. For example, it took years before I knew about nail pitting, psoriatic arthritis, etc.; I had to do my own research, since the doctors didn't inform me. Doctors will also often prescribe crappy meds that frustrate the patient, like greasy ointments and foam (the "new" Enstilar spray foam is awful), or creams for the scalp (which is nonsense, use a liquid solution or a spray!). A disease this complex really should come with a manual.

As I keep telling people, the most important part of psoriasis is getting it under control. It's not a life-threatening disease, it's just an icky one that impacts your sense of normalcy and well-being. (Although psoriatic arthritis multiplies everything.) Figuring out how to get it under control — to basically become asymptomatic — is almost the entire battle. It's a disease that for the most part can be kept in check. Since psoriasis is triggered by stress more than anything, staying asymptomatic is a positive feedback loop.

Getting psoriasis under control involves (1) doing an initial intensive treatment to get inflammation down, (2) trying out different regimes, (3) sticking to a fixed routine (topicals, etc.), (3) adjusting until you get last two right. Sticking to a routine also means not skipping topicals when you don't feel like doing it. You'll be rewarded with nice, smooth skin.

For most people, #1 means using a potent corticosteroid. Immune-suppressants (including biologics, which target the immune system responses that trigger psoriasis) are a last-resort kind of deal for people with large amounts of affected skin, since they come with potentially major side effects.

There's no avoiding steroids, but there are a few things that also help:

* Calcipotriene (a synthetic vitamin D3 derivative). Not very potent, but safe. It takes weeks to show any improvement, but it works with long-term, daily use.

* Coal tar works great for a lot of people. Shampoo is particularly great for scalp psoriasis. Comes in both weaker OTC ointments and shampoos (e.g. Neutrogena T/Gel or Pinetarsol), and also a prescription-strength formula that you can rub into the scalp and wear for a week (under a shower cap), and which can clear up the psoriasis completely for months.

* Topical immune-suppressants such as tacrilimus (Protopic) are great for tricky areas like skin folds. Less side effects than steroids.

* UV phototherapy. While a lot of people respond positively, and it's very cheap, it is of limited usefulness, as you quickly reach your maximum dosage, and the effects don't necessarily last that long.

By the way, psoriasis is very often misdiagnosed. To other reading this, if you think you might have psoriasis, get a biopsy to make sure. Doctors are pretty terrible at diagnosing it correctly. Lots of people walk around thinking they have psoriasis when they actually have seborrheic dermatitis, or vice versa.

Lastly, there's a good community on Reddit for this: https://www.reddit.com/r/psoriasis.

Good luck!


I have been through the same. I am 33 now and I was diagnosed with Hashimoto when I was 28. I am still managing the whole situation as best as I can. Today I am physically more fit that I even was in my entire life. Although I have many sessions of unexplained memory loss and brain fog.

The funny thing is that if you have one autoimmune disease, it is highly likely that sooner or later you will also encounter another one. I was diagnosed with three. Including one affecting my eyes pretty badly.

The way I am managing it all is by 1. making sure my adrenal does not deplete(went through a super adrenal crash last year) 2. good dental hygiene(it does help massively) 3. avoid sugar, refined carbs, alcohol. 4. Probiotic natural Yogurt and apple cider vinegar seems to keep my system happy, milk makes things worse. 5. B-complex and Vitamin - D on a regular basis.

point 3 and 4 are to ensure that my gut is maintained well.

The important thing is to make sure that you try to take good care of your adrenal gland and pituitary , because they tends to overwork to compensate the malfunctioning organ that is under attack at the time.

The longer I continue my unrefined diet, good sleep cycle and avoid stress, the more my body heals.

I used to be quite a sharp minded computer scientist, now that sharpness comes and goes, other times there is fog, which is not very nice :-) But I have hope that eventually I will be better, I am already much better than last few years :-)


I am going through the same right now.

2 years ago I was running my startup Tennis Buddy, and everything was fine when I got pins and needles pain one morning all over my body and blurred vision.

I have had this a lot of times before in my life (around 20 times), and it always went away with rest within 1 week with no problems. However, this time I was in the middle of finishing a contract and didn't take rest. A couple of days later, I reduced work lod to become better, however it seems like it was too late, since the pins and needles pain just didn't go away anymore.

After a month of still not getting much better, I went to see doctors, however they could not find anything. There was the assumption that it was psychological, however, I just don't have any symptoms of depression.

During that time, I noticed that only very little exercise (running for 1 min) increases the pins and needle pain for several days or even weeks. Then for the next year, I tried to not exert myself at all and stopped all work to get better. This did reduce the symptoms, however, just small exertion triggers the symptoms again. After this happening a couple of times, I also got strong muscle twitches (several thousand per minute sometimes) all over my body.

There was also the assumption that I had CFS, however, it does not fit, since I just have no fatigue at all, I only have constant nerve pain/pins and needles, blurred vision and muscle twitches.

I also moved back to my parents and had to leave my friends, so it's getting really difficult for me to stay positive. Please let me know any advice that you might have.


Stay strong man. The technology to address these sorts of ailments feels like it's right around the corner, so don't give up on this now.


won't hurt to try:

1) wim hof breathing technique

2) contrast showers

3) yoga (especially the 'mayur asana' pose)

4) any 21 day meditation audio series where each meditation is about 10 minutes long (you'll find some on YouTube)


Near complete ablation of all immune cells in circulation is proving to be pretty effective as a way to put autoimmunity into long-lasting remission. It can be done with high dose immunosuppressants at the cost of much the same symptoms as cancer chemotherapy - these are harsh drugs - plus a few day period of vulnerability to infection while the immune system rebuilds. But the cures are demonstrated, for type 1 diabetes and multiple sclerosis over the past five to ten years.

All automimmunities should be amenable to cure this way, as the malfunctioning is based on bad data that is stored in the immune cells, nowhere else. Newly created immune cells do not have this malware; they acquire it from the existing population. (It would be interesting and novel to find an autoimmunity where this is not the case).

Unfortunately, the cost-benefit equation for this current form of ablation doesn't work for things that don't kill patients. No-one undergoes chemotherapy for a condition that merely shortens your life expectancy by a decade and makes you miserable, as chemotherapy has a significant risk of death and shortens your life expectancy by a decade.

So what is needed are better forms of ablation, those with no side-effects. The programmable gene therapy cell killer produced by Oisin Biotechnologies is one possible class of approach, as are other targeted cell killing approaches such as that demonstrated last year to selectively kill blood stem cells.

Then an application of cell therapies is needed, creating immune cells from a patient tissue sample, and infusing them in bulk immediately following ablation, to remove the period of vulnerability.

These are very feasible targets. A company could be founded today, right now, to do this, and have something ready for human trials by 2019. Sadly, here as elsewhere in medicine, there seems to be no hurry to change the world.


> But the cures are demonstrated, for type 1 diabetes and multiple sclerosis over the past five to ten years.

Are you talking about the "Burt" full immune system reboot method (repeated by Snarski + Li)? I've never seen any follow-up studies on the participants, how are they doing after 5-10 years (meaning still insulin independence?)


I feel bad for the people who have told of their issues and suffering in the comments here. But I have to say that every time I see a health article on HN (or in the news) as well as the comments about individual cases it draws me in and gets me down. No benefit. I only get anxiety as a result. I have found this to be more the case in the past several years with what I call (as only one example) the 'cancer industrial complex'. Constant barrage of info discussing cancer, cures, studies, drugs, particular people's problems. A benefit to those suffering or those helping people who suffer for sure. But I would argue to everyone else potentially harmful and very hard to get away from.

Back in the day this wasn't the case. There wasn't this barrage of info. You only knew of a handful of cases in your small circle of friends or family. It didn't seem like danger was lurking around every corner. Anyone else feel the same way?


Yeah. I actually have a lot of stuff in common with the author of the article. (low platelet count, low thyroid function, low vitamin d, low iron, (also high uric acid)) And my aunt has rheumatoid arthritis. I've also always had a serious peanut allergy + a few other minor ones.

Except that, I feel fine. I'm 34, I do lots of cycling and hiking, and work on making computer games in the evenings. Reading stuff like this definitely stimulates the hypochondriac in me. Also I feel so bad for the people posting the awful symptoms they suffer. Considering I'm ok atm I should just not worry about it I think. Anyway, bit rambling, but my 2 cents.

ps. I only found out about the above details when I went to doctor for 1st time in like a decade for dizziness. Turned out there was a natural gas leak in the apartment I was renting at the time which definitely seemed to be causing it.


> I only found out about the above details when I went to doctor for 1st time in like a decade for dizziness

I go to the doctor every 6 months for a checkup and lab work. I got into the habit of having the lab work done (request the script) the week before the appointment. That way I wouldn't have double anxiety. Prior to that I'd meet with the doctor, he'd give me a script and then I'd have to wait for him to call with the results. Also found it was helpful to schedule other appointments (eye, dental) around the same time. Compact all the anxiety into a 2 week period.

One thing that is good is my wife is an internal medicine doctor but deals usually with really sick hospital patients. So typically anything that I am concerned about I can just ask her and she can put my mind to ease. (So far hah hah).

The only upside to the anxiety that I have (I wouldn't call it severe but it's noticeable) is that I get a definite mood bump right after an appointment when I find nothing is wrong. [1]

[1] So hey since you don't go every year or more you don't know what you are missing!!!


More so than brain function, cancer, etc, I feel like we'll look back in a decade or two's time and be shocked at how little we understood autoimmune diseases. Sure, we understand that the immune system adapts in an almost evolutionary way, and can wrongly recognize self-components as foreign. But what signals cause this adaptation? What's causes antibodies to develop against your thyroid, or beta cells, or skin? We understand how so many components of the immune system work, but have so far to go assembling the pieces.


> The truth is, I had no idea what autoimmune disease really was. For years, I’d known that two of my mother’s sisters had rheumatoid arthritis and ulcerative colitis (and my father’s youngest sister had recently learned she had Hashimoto’s). But I didn’t understand that these diseases might somehow be connected. At Christmas, I’d had lunch with three of my mother’s sisters—humorous, unself-pitying Irish-American women in their fifties—at my grandmother’s condo on the Jersey Shore, and they told me that two of my cousins had been feeling inexplicably debilitated. “None of the doctors can figure out what it is,” one said, “but I think it’s thyroid-related.” Another aunt told us that, along with the rheumatoid arthritis she’d had for years, she, too, had recently been given a diagnosis of Hashimoto’s, and both were autoimmune in nature. The third aunt had ulcerative colitis, and told me that a cousin had just been given that diagnosis, too. “They’re all connected,” one of them explained.

They certainly are. It's an interesting area of genetic correlations, the autoimmune cluster: https://en.wikipedia.org/wiki/Genetic_correlation#Disease Also notable for relatively large genetic effects from the large and difficult MHC gene.


The immune system is scary. It's based on mutability and selection. During embryonic development, there's basically a phase where "self" gets defined. Lineages of immunocompetent cells that can target self get killed off.

But sometimes it screws up. Maybe you encounter something that triggers expansion of lineages with autoimmune potential. Or maybe there's damage that exposes previously hidden antigens to the immune system. There's undoubtedly a genetic component too.


To best honest it sounds more like CFS than autoimmunity. The article says that it turned out not to be thyroid, and the autoimmune diagnosis was just presumed. Generally when you have those symptoms it is termed CFS, but people don't like CFS because they incorrectly think it means "all in your head" or "you're not really ill".

CFS tends to be triggered by stress (as it was in this case), and sufferers tend to lead stressful lives (being an editor of New Yorker is definitely stressful). The things that worked for her -- alternative therapies, living a healthier and less stressful life -- typically help with CFS.

From having CFS myself and recovering, it seems to be caused by a state of persistent burnout caused by chronic stress. It's usually multiple stressors that build up and cause the brain to shut down the energy supply. It's not caused by a moral failing or laziness. I see it as similar to the central governor that limits athletic performance. You have no control over it, other than to change your lifestyle and hope that your brain recognises that there is no longer any chronic negative stress.


This is actually what the article says, which may inform your diagnosis:

> A few days later, she called to say that I had antibodies to my thyroid, a butterfly-shaped gland in the neck that regulates metabolism and energy. My thyroid was being attacked by my immune system—a disease known as autoimmune thyroiditis

> A common symptom of autoimmune diseases is debilitating fatigue.

> I found people who had the same supposedly disconnected symptoms I’d had over the years. One woman, like me, had had hives for months before an autoimmune disease was diagnosed; some had low cortisol or Vitamin D and Vitamin B12, or were anemic. Others experienced joint pain and the same maddening itching sensation that came and went.

> My joints hurt, my neck hurt; I had nosebleeds and large bruises up and down my legs. I spent hours every day unable to work, in the grip of severe itching in my arms and legs.

> "Your labs look normal, except for the thyroid hormones"

> A rheumatologist had found an antigen in my blood that is associated with a number of autoimmune diseases.


It also says:

>None of these were usual symptoms of thyroiditis.

>you could have a low antibody count and still be quite sick, or a high antibody count and feel fine.

>my TSH, a pituitary hormone that is supposed to get higher when your thyroid hormones get low, never budged

Also see:

http://www.sciencedirect.com/science/article/pii/S1568997207...


This is the stupidest thing I've read. She has a confirmed auto-immune disease. CFS (Chronic Fatigue Syndrome) isn't a diagnosis -- it's a description of symptoms with no understanding of the underlying cause. Hashimoto's is an actual disease, as we understand the mechanism behind it, even if we can't prevent it.


Try actually reading the article -- and perhaps doing some research -- before deciding to make an ignorant attack.

- she doesn't have auto-immune disease any more, but still has symptoms - auto-immune diseases are typically triggered by stress - we know that stress is a trigger for CFS and it fits the etiology

>Hashimoto's is an actual disease, as we understand the mechanism behind it

No, not quite. Many people have thyroid auto-antibodies but don't have thyroiditis, and some people (like the author of this article) have no auto-antibodies, but still have symptoms. Also there have been no placebo-controlled trials on the treatment, so we don't even know if it is effective. Do some research and you'll see it's not quite cut and dried.


Chronic fatigue can be caused by undiagnosed organic illnesses.

Personal anecdote: I had CFS for several years, and when the diagnosis (an easily treatable genetic condition) was eventually made, and treatment taken, I was better within a few months.


Yes, but by definition it isn't CFS if that is the case, as CFS is a diagnosis of exclusion at present.

It's certainly possible that CFS is caused by some as-yet-unidentified organic illness. However the science doesn't seem to point in that direction (as the stress system seems to be centrally implicated), and it also doesn't fit with the experiences of patients like myself who have fully recovered.


I may be splitting hairs, but "chronic fatigue" is a symptom. When its aetiology is unknown it is often classified as CFS. I would not be surprised to find that as medicine progresses many cases of CFS become re-classified.

Certainly, stress would exacerbate any symptoms of fatigue.


Yes, that's pretty much what I said. With the addition that if you look at the overall evidence it does seem to be pointing towards stress as the cause.


In the absence of an underlying vulnerability, it would seem pretty unlikely that stress alone would be sufficient to cause CFS. Many people have very stressful lives (including being refugees, being under regular fire, etc) without getting CFS.


The same can be said for PTSD. Whether or not chronic stress leads to hypocortisolism and burnout/CFS seems to be whether or not dealing with the stress is in the best interests of the organism (https://www.ncbi.nlm.nih.gov/pubmed/15950390), along with other factors such as time since onset, nature of the stress, personality factors, etc.

Stress-related disorders are quite common among the military and refugees (higher level of prevalence than the general population).


Was the diagnosis hemochromatosis?


Yup, and highly penetrant. Luckily it was caught before the worst consequences manifested themselves.

What made you think of hemochromatosis?


AFAIK the latest on CFS is that it is autoimmune. Also thyroid conditions often goes into remission so negative tests don't necessarily mean there is was nothing there. And yes both can be triggered by stress (as in my case of fixed Graves and current CFS) but I don't think lifestyle and lower stress is necessarily sufficient for everyone to improve. Effectively retiring wasnt sufficient for me. I think there is a multifaceted brain / microbiota axis but I'm still researching and experimenting. LDN will be my next experiment.


>AFAIK the latest on CFS is that it is autoimmune

No, that's not true at all. Lots of research going on now, but nothing found yet. There has actually been research for years showing autoimmune dysfunction in CFS, but there's no evidence it is causal.

Stress has been shown to trigger autoimmunity, and is known to cause the immune abnormalities seen in CFS. Basically stress causes a shift to Th1-like immunity, which makes it more likely the body will attack healthy cells, as well as impaired NK function.

>I don't think lifestyle and lower stress is necessarily sufficient for everyone to improve

Anecdotal, but I have completely recovered 100% (zero symptoms for 17 years). I've also talked to lots of other people who have recovered. If you're still experiencing CFS, I would say reducing stress (including quitting a stressful job if you're in one), and dealing with any emotional stressors, is the main thing to concentrate on. After that, increase pleasurable physical and mental activities. There's no current drugs or supplements that will help at all (other than perhaps reducing some symptoms).


When I was a lot younger than I am now, I was rushed to a hospital ~1000KM away from where I live, with liver-function-markers shooting through the roof.

After 2 weeks of checking everything in every way possible, they figured I had auto-immune hepatitis (body attacks my liver). That explained why I had been very tired, doctors said I'd take about 6 months before I could return to school, because I would be too tired and might get ill because my immune system would be weaker as I ate medicine limiting my immune system.

After 2 weeks of staying mostly home, eating immuno-repressant, I was bored as hell, went back to school and was back in full form, and I rarely get a cold or anything.

Never had any symptoms other than yellow eyes when it was worst, and extreme tiredness when it was the worst, apart from that it only shows itself when people actually analyze my blood...

No one really knows what the cause is, but there are many theories. It's fun to add some mystery to life, there's still a lot to discover ^^


It may not work for everyone but for my partner's autoimmune disease (Lupus) eating raw cannabis has been very stabilizing. The raw form has the acid form of the cannabinoids, which are responsible for the anti-inflammatory qualities associated with cannabis.

The heated form is also useful, but thr key has been to incluse lots of raw form.


In case it's helpful to anyone who suffers from CFS I want to share a treatment which enabled me to recover 100%. It's called the Lightning Process:

http://lightningprocess.com

The theory is that CFS is caused by long term anxiety which sets off biochemicals such as adrenaline into your heart and bloodstream. These chemicals suppress your immune system and reduce your energy systems.

The treatment aims to switch off the source of the negative chemicals i.e. stop the anxiety. The methods are a mixture of self talk/coaching, posture changes, recognizing and confronting sources of anxiety and setting clear life goals to work towards a place of feeling less anxiety.

The LP was recommended to me by someone who also recovered from CFS. I'd say definitely give it a try if you are a sufferer of CFS, chronic anxiety or similar illness.


Do note that the constellation of symptoms associated with "chronic long-term anxiety" isn't exactly the same as the one for auto-immune disease; it's rather much closer to that of https://en.wikipedia.org/wiki/Cushing%27s_syndrome. CFS and Cushings are indeed probably related, though.


I was diagnosed with Kawasaki Disease at age 2.5, a condition where the immune system attacks the blood vessels. I'm 29 now and recently became very ill; I lived off of less than 500 calories a day, for a month, without losing weight. I began to hallucinate lightning upon seeing light and believing I could read others minds.

I think the Epistein Barr Virus plays a beneficial role in the regulation of autoimmune disorders. Once it sets up shop inside a cell, it activates to produce its viral proteins upon low vitamin B12 or poor mitochondrial function. Its (9) proteins are similar to human inflammatory proteins and confuse T-cells into becoming self-reactive. Which could possibly redirect some autoimmune attack that is causing a decrease in the hosts metabolism into systemic inflamation. (Vitamin B12 is a methyl donor which is used to silence gene promotors, low vitamin B12 could possibly cause the cell be in some uncontrolled state.)

I've found relief for my condition in vitamins B,C,D, Immunoglobulin (sold OTC as colostrum), Excedrin, DMSO, iodine, and marijuana (prepared in a pressure cooker with coconut milk).

My family thought I went insane, all I talked about was DMSO and iodine for several months. This was until the family dog developed a fatty tumor on her leg that cut off its own blood supply and became necrotic. I applied the DMSO/iodine and it was greatly improved within 24 hours and almost completely gone within 5 days.

All I really know about those drugs is DMSO suppresses mitochondrial activity and iodine increases it.


Has anyone managed autoimmunity with food? I've seen several people who went on a keto diet and psoriasis disappeared. I've seen people who go on a low fat vegan diet and it cleared up. There's seems to be a handful of diets which give some people success so I'm not advocating one diet over the other. Just that there may be a way to manage it and was wondering if anyone has had success?


"Has anyone managed autoimmunity with food? I've seen several people who went on a keto diet and psoriasis disappeared."

I would think the first step would be elimination of food entirely, via fasting - perhaps for 16 hours at first, then 24 hours, as a very simple, first order experiment.

In terms of a workable troubleshooting methodology, that would be the most efficient first step. Then you can add things back in bit by bit.

I think there's a deep human tendency to wish to solve health problems with the addition of food. Depending on the decade it's superfoods or antioxidants or purple veggies or beef broth or whatever. This is probably a delusion.

I think you can indeed affect your health with food - but only by subtraction. So save yourself years of "is it gluten or isn't it" and just see what zero calories does for you right now.


There has been some interesting discoveries related to sudden onset red meat allergies in eastern Australia due to tick bite:

http://www.abc.net.au/science/articles/2014/02/25/3951271.ht...

When the ticks bite, they inject a small amount of blood from their previous host. If the host was a non-ape mammal, then that blood will also contain a sugar, alpha-galactose, that humans lack. Sometimes the immune system misidentifies this sugar as a foreign body and develops antibodies. Now when the bitten person eats red meat their immune system ramps up to attack the alpha-galactose, resulting in a delayed onset allergic reaction.

Having read the article, the appearance of the rash in Vietnam followed by the onset of symptoms suggests something similar make be the cause in the author's case. Her body may have developed antibodies to something food in common foods. This might explain the headaches she experienced when she ate.


Celiac disease is an autoimmune disease that can be controlled entirely via diet; specifically because people with it cannot process the Gluten found in wheat.

(Fun fact: Rice has gluten too; but it's not a variety that people with Celiac have trouble digesting).


Gluten isn't a particular molecule. It refers to the mix of proteins found in the wheat tribe of the family Poaceae. Rice has certain proteins and prolamins, but they are not those found in wheat. When people refer to gluten in the chemical sense, most people mean gliadin and glutenin. Rice has neither.

In what way do you mean rice has gluten? Glutinous rice is 'glutinous' in the Latin sense of the word -- it's sticky (like many plant products). It does not mean it has gliadin or glutenin.


any diet which keeps your gut healthy will work. Lots of fruits and vegetables and seeds and probiotic works well. It works for me.


I have had psoriasis all my life. I've managed it with prescribed topical corticosteroids.

I went on the Keto diet 3 weeks ago (just to lose some weight). A fantastic side effect is my psoriasis flare ups have started to diminish notably.

I also feel better in general, no fatigue. That can be attributable to being in better shape, but I think a lot of it is the brain fog that Meghan spoke about in her article. When your body stops attacking itself, you magically have much more energy :)


Yes, keto seems to work well for some people with certain issues, and AIP (autoimmune paleo) is the leading the diet for autoimmune conditions. It works extremely well for many, many people.


Diet plus lifestyle. Yeah.

But I had to roll my own, so to speak, as everyone thinks that does not work for my condition. I get a LOT of flack for talking about it online.


I have nasal polyps (an autoimmune problem). Quitting added sugar helped a ton (and then I lost 10kg by accident).


Probably avoiding inflammation help to avoid triggering the immune system.


My wife is going through a version of this right now. We are scheduled to see a specialist at Stanford in a few weeks.

Just last March we hiked to Patagonia and camped there. We hiked for about 8km to the camp place. She even carried more weight on her back than I did. But this last December when we went snowshoeing in the Canadian Rockies, she had to stop every few minutes from fatigue. I helped carried half of her stuff for her. Not having her, the old ways, has been rather sad. She has an amazing attitude about it, so it's very helpful. But I'm constantly praying and hoping for her to get better.

I have read so many things online and have come out rather frustrated how limiting the Medical science is around treating or fixing autoimmune disease.

The only thing I've found so far is this:

I call it the, "nuclear option". They use chemotherapy to kill your immune system and use stem cells to rebuild it from scratch. There is apparently a hospital in Mexico that does that for less than $100k with some success but no true scientific rigor yet [1]

Alternatively, there is some research suggests that fasting for 48-72 hours on regular bases has shown to regenerate a new immune system. However, unclear if the new immune system will just attack the antibodies again or it would be blinded to that history. I wish they would do more research on that front [2]

I also have been thinking about other ways that technology might help sufferers better monitor themselves and ultimately use some data analysis to better understand if there is specific diet changes that can help keep the disease in control.

If you know of other things please comment.

[1] http://www.thetimes.co.uk/article/bbc-reporter-hails-stem-ce...

[2] https://news.usc.edu/63669/fasting-triggers-stem-cell-regene...


Before you go nuclear, have you considered a less invasive option, namely fecal transplants? There's not much research yet, but it looks promising for a lot of diseases, including chronic fatigue: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284325/


I'm a big believer in the gut-immune system connection. I've observed that with my own boy. However, there is no real good science there, yet. This is an area that could use some grants. While every philanthropist wants to cure cancer, it seems like there is a lot of good science out there in the need of investment.


I'm currently seeing a functional medicine MD recommended by my rheumatologist. Functional medicine doctors are really into the gut-immune side and my rheumatologist says he's seen some amazing results. I've been on an elimination diet for about 2 months without results, but in almost every paleo/aip/whole30/pfd cookbook I've been reading, the author's bio says something about recovering from autoimmune disease through diet.


One thing that helped me (though I'm not yet finished recovering from a period of high stress) was to do the things that strengthen the gut barrier. As long as the barrier is permeable for large particles, you will have foreign objects floating around and your immune system attacking them. Here is a very long article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604320/#!po=2....

Specifically, strains like Bifidus Longum are beneficial, and of course reducing stress (negative outlook etc) is. The article particularly stresses efficacy of 5-HTP, but I've not tried that yet. IMO very overlooked one: weak stomach acid. My symptoms get WAY better if I consistently use vinegar and supplement zinc.


Interesting, that is what my doctor said as well. I did test positive for SIBO, so I am currently taking rifaximin which should help. I had a friend with various vague problems as well and he said he felt 75% better after getting treated for SIBO and candida. I've also been taking digestive enzymes, betaine hcl and iberogast but they don't seem to being doing anything.

Before I started seeing this doctor, I did take VSL #3 which greatly helped my relatively mild stomach/digestive problems, but did nothing else. I know there are quite a few people with severe Crohn's/UC that have achieved remission by taking massive amounts of it daily.


Problem is, except from some prebiotic supplements and cultured micro organisms, there is not much money to be had, and therefore will not be funded broadly.


This is next on my list if LDN doesn't work.


I have an autoimmune condition. I've tried: fecal transplant, LDN, helminthic therapy, AIP diet, and ofcourse vitamins/supplements. To varying degrees and with varying side effects, LDN, helminthic therapy, and AIP all work and seem to have the widest application. I would recommend trying AIP first for 14-28 days with vitamins/supplements (length depends on how quick your issues appear/disappear), and possibly adding LDN on top if need be.

LDN and Helminthic therapy both work but aren't very natural, so using them is a quality-of-life decision. The main problem with helminthic therapy is that it takes too long to start/stop.

I would only consider fecal transplant if your issues are predominately digestion related, and I would only bother if regular probiotics are life-changing for you and you want to push that as far as you can. Then again there isn't any good reason to NOT do it; just shame, etc., so go for it (this also applies to LDN and helminthic therapy though, so whatever).

I was very sick for about 8 years and for 3 of those years was pretty debilitated. This year I am finally in a good place. I don't currently eat a restricted diet anymore and I take very few supplements and I don't use any of the above anymore.

Supplements that people find helpful might include: glutamine, beta-glucans, turmeric, D3...

Anyone reading this with an autoimmune condition or who thinks they might can please email me. If you have questions or are struggling, please reach out.


))<>(( truly is the miracle cure.


48-72 hours is not long enough to regenerate your immune system.

Valter Longo has recommended at least 4-5 days to treat auto-immune disorders [1].

I've done 5 day fasts. For something serious I would try 7.

[1] http://joshmitteldorf.scienceblog.com/2014/06/12/the-three-d... “3 days is optimal for mice. For humans 4-5 minimum, depending on what you are trying to achieve”


What about LDN? I know I'm sounding like a broken record / shill here. I've not had the chance to try it as it's not available in my country. But it's available in the US as prescription as off label and compounding chemists can often refer you to a dr that will prescribe it. I'm even considering flying to the US to try it.


I had never heard about it, but what I just read sounds great. It seems to work at a 1:100k dilution, so maybe you might get it under the guise of a D5 homeopathic remedy?


You can just order Naltrexone online and dissolve a pill in 50ml of water yourself.


That's what I'm doing; it's just taking time to get here. ETA one more weeks.


My brother went through a Stem Cell Transplant for CIDP. He went from being nearly wheelchair bound to being able to run. Look into Dr. Burt from Northwestern in Chicago for a domestic way to get this done.


Hi! These symptoms sound familiar; I dealt with this from 2007-2009 and am now mostly recovered. The journey was quite long, but I'll detail what worked for me in the hope that it sheds some light.

The important thing you both need to understand is that this won't go away quickly or easily. It will take serious changes and lots of trial and error. Unfortunately, from what we know about autoimmunity (I've seen several doctors and read hundreds of scientific papers on it), some treatments work for some people and not others.

The first thing I did was work with a doctor to get tests done. We found the following:

-- Chronic Epstein-Barr (this is the "hallmark" of autoimmune/CFS, as I would come to find out)

-- What we initially labeled as Celiac disease but later came to be known as "non-Celiac gluten sensitivity"

-- Thyroid abnormalities, indicating Hashimoto's, but "not bad enough to treat" as an endocrinologist explained.

-- Low vitamin D levels

The doctor called me right away when she got the results and said "You need to stop eating gluten NOW." Thus began a multi-year journey into diet. At this point, I was still too tired to even consider exercise or anything that non-autoimmune sufferers recommend for this.

What I ended up doing:

-- Sold my company (you have to take out whatever the stressor is--you and your wife will likely be able to point to it)

-- Took gluten out of my diet for over 2 years. Later I also took out sugar. I've also experimented with keto and paleo, and, to be honest, a ketogenic diet does work extremely well for my symptoms. However, it can add stress to the body, so I'd recommend "low carb, no grains, gluten or sugar" instead if you attempt this. The "autoimmune paleo" diet that is around now seems reasonable, and is pretty similar to what I did. (I have always been able to eat nuts and cheese, however.)

-- Added a metric ton of probiotics to my diet however I could consume them. This, plus the diet was, in my opinion, what helped me to heal physically.

-- Consumed 5,000IU vitamin D per day (far above current recommendations, but autoimmune sufferers do not digest vitamins well.) Get blood tested every 6 months to make sure yours is still in "normal" range--mine was.

-- There is most certainly an emotional/stress/anxiety component to this as well. I worked with several practitioners on that side, using CBT, hypnosis, and mindfulness techniques to go deep into my body and mind and help re-train it to not stress out at every available opportunity. Running a stressful tech company had put me in "fight or flight" mode, and it took years of retraining and therapy to get out of it. I view it similarly to re-training your muscles to walk after you have had an accident. She will have to find triggers and work on them one at a time and train different responses. Talk therapy helps here. CBT helps here. I found hypnosis to help here as well, though some people do not.

-- Found out my ACE score was higher than average ( https://acestoohigh.com/got-your-ace-score/ ) and worked on releasing childhood trauma with practitioners. This was a HUGE shift.

-- I get flu shots every year since I am still susceptible to illness. I still get sick more easily and stay sick longer than most people.

It has been several years and I would say I am at 90%. I have been able to eat gluten again, though I certainly feel better when I do not eat it. I avoid sugar, as it seems for me to be an even worse trigger than gluten. I stay as low-carb as I can in general and eat foods that are high in fat whenever possible.

I stay mindful and avoid anxiety triggers. I am on ADHD and anxiety medication, I am under the care of a psychiatrist, and my regular doctor blood tests every 6 months.

Over the last 3 days, I've walked over 22 miles, which would have been impossible from 2007-2009, so I've come a long way!

If chronic Epstein-Barr comes up in tests, note that certain viruses/bacteria which would be normal for most people (food poisoning, the flu) can trigger a relapse. This unfortunately happened for me just a couple months ago and I was sick for most of January. I worked on mindfulness, took my supplements, and did a lot of meditation, and have come to a healthier mental state yet again, where I'm pretty sure I'll be sick less in the future.

It's been 10 years this year since this started, and while it hasn't been a particularly fun journey, it has brought me to a deep awareness of self, enabled me to live in the present moment, and I love who I am much more than I did previously. This will be part of me for the rest of my life, but I no longer allow it to define me. In that sense, I am much better than I have been previously.

I hope this helps you and your wife. I know this post is long, but to me it still only feels like it scrapes the surface. This is going to be a journey for you both, and it will have ups and downs. Keep going toward a better understanding of self and how everything in the environment (food, stress, loud noises, what people say) relates to your/her self, and it will get better.

If you'd like to reach out, contact details are in my profile.


I don't understand the pain or struggles with such a disease. I am sorry for those who suffer. But research in the field is becoming very exciting. Right now tons of data from patient's antibody and T-cell receptor repertoires are becoming available. The field is going through a big data moment. Suddenly large number of antibody and T-cell receptors are being sequenced. Hopefully smart people will be able to identify disease causing sequences

Data Fountain: https://clients.adaptivebiotech.com/immuneaccess


I have CFS/ME which I manage to about 60% normal. It's not enough and like many I'm doing enough to continue existing but nothing more. My next experiment is Low Dose Naltrexone (LDN) which sadly had to be bought illegally over the Internet so it's taking a long time to get. Has anyone here tried this? Did it work?


It worked very well for me but made me extremely (scarily) restless (mentally too) and screwed my sleep up beyond belief. I never tried dosing during the day, though. Feel free to email me.


I have not tried it, but my functional medicine doctor has said she has had patients try it with a decent success rate.


Have you heard of the lightning process?

http://lightningprocess.com

I had CFS/ME and was referred by a friend to a LP practitioner, after following the process and making some life adjustments I made a full recovery.


I have hashimoto's, I'm wondering if anyone has more info on the fasting that some people mentioned in the comments, I've never heard of this, I've done AIP and that worked for me pretty well, but am always looking for other potential ways to stabilize the disease.


I have Crohn's Disease. It's a struggle. Some folks have recommended getting a fecal transplant. It is supposed to add bacteria to your gut that Crohn's patients don't have. This stops the autoimmune response. Supposedly. Not sure if this sort of treatment is approved by the FDA.


With almost any autoimmune disease, there are a thousand remedies that haven't yet been proven to be effective. It might be... or not, but if you can find other ways to manage it through more traditional channels (doctor, surgery, etc.), then I'd go that route.

Have had Crohn's since 2003, have had every drug that has been medically approved by the FDA, and had first surgery last year.

Beware of anecdotal data, and always get a second (and sometimes third!) opinion before changing any kind of treatment.


I have a rare auto-immune disease, a subtype of vasculitis. No symptoms, no abnormal blood tests. I got really lucky finding it through a routine xray. Have been managing it and monitoring it ever since.

Been down the kumbaya food path, maybe it's what got me this disease (tried some shady immune boosting drinks on and off before getting diagnosed, just for the sake of it).

I am monitoring research and for my specific disease there doesn't seem to be much in the pipeline. But one drug developed for some other auto-immune disorder can manage mine as well. I am putting hope in AI and machine learning, to guide scientists to faster discoveries. And I hope the socio-political climate doesn't escalate to the point of halting research.



[flagged]


> Summary generated by smmry

Please don't post these here. HN threads are for conversation between people.


Interestingly, this summary completely overlooks the actual point of the article, which is the author's difficult and emotional coming-to-terms with an unknown illness, engagement with medical uncertainty, and attempts to maintain a sense of self.

I guess this is because smmry uses entropy-based methods of summarization where personal pronouns and mental states are relatively probable / low information content? In any case, it's a good read for developing empathy—chances are you have a friend going through this stuff.


This is a good example of how hard summarising a long-form article is. I give this attempt a C-


The last two lines above are certainly true.

googles smmry


Autoimmune disease occurs when, for some reason, the body attacks its own healthy tissue, turning on the very thing it was supposed to protect. This, at least, is the premise: “auto,” or “self,” attack.

From the start, though, the study of autoimmunity has been characterized by uncertainty and error.

I hate the term and the very concept of an autoimmune disease. I can't wait for the world to conclude this was lazy BS that allowed doctors to gloss over their lack of understanding of what was really going on. I am heartened to see the above passage acknowledging that "at least, that's the premise" (aka the idea or current theory) and the next sentence acknowledging that this idea really isn't on very solid ground.


Do you not believe the body can create antibodies against itself? In what sense do you hate the concept of auto-immune disease? Do you not believe in cancer as well


I have a so called autoimmune disease. I have gotten dramatically healthier by making dietary and lifestyle changes.

My experience of being diagnosed with an autoimmune disease is that it is a good excuse for doctors to wash their hands of responsibility for getting you well. They blame your defective body and their goal is "symptom management."

Using your cancer example, it would be like not trying to rid your body of cancer and just trying to slow the growth of the tumors instead. People would balk at being told we aren't even going to try to cure you of cancer, we are just going to manage your symptoms until it kills you. But this is the gist of what patients are routinely told if their condition is classified as an autoimmune disorder.

Furthermore, my experience of my condition does not fit with the idea that my body simply attacks itself for no apparent reason. My experience fits much more closely with the idea that my body is the battleground and it takes collateral damage in the fight.

I believe when the body attacks some part of itself, that body part likely carries infection or otherwise has had something go so wrong that treating the entire area as The Enemy makes sense at this time. That state can be reversed. If it is reversible, no, the body has not simply gone insane and started randomly lashing out at itself. Its actions are logical and purposeful.


I want to use HN to do a quick informal survey on this topic: please state # of your male friends with similar conditions, # female friends with similar conditions, country or state, and whether you live in an urban vs. rural area (yes I know that this is a crappy methodology and likely a very biased sample)


Do you refer to what is spoken about in the article, or auto-immune disease as per se?

I have heard medical statistics stating that 9 out of 10 with auto-immune disease is female. Which to me would imply that something gender-specific, like genetics or the likes, is hugely responsible.

I get the feeling what you're getting at is that women are supposed to be weaker and get easily confused and it's all in their head though (apologies if that is in no way what you mean.)

But I can confirm that I am one of the lucky 1/10th of the overall population who have a diagnosed auto-immune disease being male.


I have Ulcerative Colitis which is an autoimmune disease and my doctor who is a famous IBD researcher has said that Chrons/Colitis affects women about 90% more often than men. In fact on my dads side there are 3 females with it (both 2x Chrons and 1x Colitis) and I'm the only male so far in the family tree.




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