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.
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:
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.
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.
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 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.
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.
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.
Here Mercola is ranked in the same "pure garbage"category as the Food Babe. http://www.nature.com/news/science-journalism-can-be-evidenc...
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.
Watch out! Looks like a scam artist that sells voodoo.
He has been vegan for almost a decade and has had no major problems since.
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.
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.
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.
That's where everything finally came together for me.
I don't know your pain but it's been super helpful for my wife.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
Humira etc is very expensive but works for lot of people that other drugs don't.
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.
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.
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 :-)
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.
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)
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.
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?)
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?
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 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. 
 So hey since you don't go every year or more you don't know what you are missing!!!
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.
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.
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.
> 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.
>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
- 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.
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.
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.
Certainly, stress would exacerbate any symptoms of fatigue.
Stress-related disorders are quite common among the military and refugees (higher level of prevalence than the general population).
What made you think of hemochromatosis?
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).
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 ^^
The heated form is also useful, but thr key has been to incluse lots of raw form.
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.
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.
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.
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.
(Fun fact: Rice has gluten too; but it's not a variety that people with Celiac have trouble digesting).
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.
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 :)
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.
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 
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 
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.
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.
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.
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.
Valter Longo has recommended at least 4-5 days to treat auto-immune disorders .
I've done 5 day fasts. For something serious I would try 7.
“3 days is optimal for mice. For humans 4-5 minimum, depending on what you are trying to achieve”
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.
Data Fountain: https://clients.adaptivebiotech.com/immuneaccess
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.
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.
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.
Please don't post these here. HN threads are for conversation between people.
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.
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.
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 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.