16 ms·

I had an autoimmune disease, then the disease had me (2013)

215 points by daegloe 10y ago

manmal 10y ago
Summary generated by 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. Even the term "Autoimmune disease" may be imprecise: we don't know in every case whether autoimmune dysfunction is the cause of the disease, rather than, say, a consequence. Thyroid patients tend to be preoccupied with antibodies, but Rose, who now runs the Center for Autoimmune Disease Research at Johns Hopkins, notes that one culprit in Hashimoto's might be the T-lymphocyte-you could have a low antibody count and still be quite sick, or a high antibody count and feel fine. The American Autoimmune Related Diseases Association estimates that as many as fifty million Americans suffer from autoimmunity, which makes it one of the most prevalent categories of disease, ahead of cancer. A lot of people with autoimmune diseases would like to see the establishment of clinical autoimmune centers, where a single doctor would coördinate and oversee a patient's care, as at a cancer center. A common symptom of autoimmune diseases is debilitating fatigue. The real coming to terms with autoimmune disease is recognizing that you are sick, that the sickness will come and go, and that it is often not the kind of sick you can conquer.
- opless 10y ago
  The last two lines above are certainly true. googles smmry
- glup 10y ago
  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.
- Angostura 10y ago
  This is a good example of how hard summarising a long-form article is. I give this attempt a C-
- dang 10y ago
  > Summary generated by smmry Please don't post these here. HN threads are for conversation between people.
deleted 10y ago
[deleted]
Karlozkiller 10y ago
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 ^^
glup 10y ago
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)
- Karlozkiller 10y ago
  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.
  - dmix 10y ago
    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.
researcher11 10y ago
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?
- rdtek 10y ago
  Have you heard of the lightning process? http://lightningprocess.com 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.
- uberduber 10y ago
  I have not tried it, but my functional medicine doctor has said she has had patients try it with a decent success rate.
- 55555 10y ago
  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.
cpncrunch 10y ago
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.
- researcher11 10y ago
  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.
  - cpncrunch 10y ago
    >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).
salimmadjd 10y ago
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-cell-cure-for-multiple-sclerosis-5wd3hwfsh http://www.thetimes.co.uk/article/bbc-reporter-hails-stem-ce... [2] https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/ https://news.usc.edu/63669/fasting-triggers-stem-cell-regene...
- manmal 10y ago
  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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284325/
  - fnord123 10y ago
    ))<>(( truly is the miracle cure.
reasonattlm 10y ago
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.
- kakoni 10y ago
  > 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?)
raydev 10y ago
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.
- nostromon 10y ago
  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.
mirimir 10y ago
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.
__d__ 10y ago
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?
- pybank 10y ago
  any diet which keeps your gut healthy will work. Lots of fruits and vegetables and seeds and probiotic works well. It works for me.
- rsync 10y ago
  "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.
- ww520 10y ago
  Probably avoiding inflammation help to avoid triggering the immune system.
- 55555 10y ago
  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.
- eigenrick 10y ago
  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 :)
gwern 10y ago
> 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 https://en.wikipedia.org/wiki/Genetic_correlation#Disease Also notable for relatively large genetic effects from the large and difficult MHC gene.
pybank 10y ago
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 :-)
wellboy 10y ago
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.
- hive_mind 10y ago
  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)
- rayuela 10y ago
  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.
zzyx1yz 10y ago
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.
- yladiz 10y ago
  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-aspirin-advil http://www.vox.com/2015/8/17/9165189/best-painkiller-tylenol... 2: https://www.nytimes.com/2015/07/14/science/experts-urge-sparing-use-of-nonaspirin-painkillers.html https://www.nytimes.com/2015/07/14/science/experts-urge-spar...
  - 10y ago
rdtek 10y ago
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 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.
- derefr 10y ago
  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 https://en.wikipedia.org/wiki/Cushing%27s_syndrome. CFS and Cushings are indeed probably related, though.
- deleted 10y ago
  [deleted]
gist 10y ago
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?
- everyone 10y ago
  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.
  - gist 10y ago
    > 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!!!
spraak 10y ago
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.
SQL2219 10y ago
https://www.ncbi.nlm.nih.gov/pubmed/27417999 https://www.ncbi.nlm.nih.gov/pubmed/27417999
jostmey 10y ago
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 https://clients.adaptivebiotech.com/immuneaccess
Mz 10y ago
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.
- tathougies 10y ago
  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
  - Mz 10y ago
    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.
alabamabill 10y ago
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.
thanatosmin 10y ago
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.
astrojams 10y ago
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.
- geerlingguy 10y ago
  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.
westvaflamer 10y ago
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.
olelu 10y ago
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.

215 points by daegloe 10y ago

Summary generated by 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. Even the term "Autoimmune disease" may be imprecise: we don't know in every case whether autoimmune dysfunction is the cause of the disease, rather than, say, a consequence. Thyroid patients tend to be preoccupied with antibodies, but Rose, who now runs the Center for Autoimmune Disease Research at Johns Hopkins, notes that one culprit in Hashimoto's might be the T-lymphocyte-you could have a low antibody count and still be quite sick, or a high antibody count and feel fine. The American Autoimmune Related Diseases Association estimates that as many as fifty million Americans suffer from autoimmunity, which makes it one of the most prevalent categories of disease, ahead of cancer. A lot of people with autoimmune diseases would like to see the establishment of clinical autoimmune centers, where a single doctor would coördinate and oversee a patient's care, as at a cancer center. A common symptom of autoimmune diseases is debilitating fatigue. The real coming to terms with autoimmune disease is recognizing that you are sick, that the sickness will come and go, and that it is often not the kind of sick you can conquer.

opless 10y ago
The last two lines above are certainly true. googles smmry
glup 10y ago
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.
Angostura 10y ago
This is a good example of how hard summarising a long-form article is. I give this attempt a C-
dang 10y ago
> Summary generated by smmry Please don't post these here. HN threads are for conversation between people.

deleted 10y ago

[deleted]

Karlozkiller 10y ago

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 ^^

glup 10y ago

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)

Karlozkiller 10y ago
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.
- dmix 10y ago
  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.

researcher11 10y ago

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?

rdtek 10y ago
Have you heard of the lightning process? http://lightningprocess.com 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.
uberduber 10y ago
I have not tried it, but my functional medicine doctor has said she has had patients try it with a decent success rate.
55555 10y ago
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.

cpncrunch 10y ago

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.

researcher11 10y ago
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.
- cpncrunch 10y ago
  >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).

salimmadjd 10y ago

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-cell-cure-for-multiple-sclerosis-5wd3hwfsh http://www.thetimes.co.uk/article/bbc-reporter-hails-stem-ce... [2] https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/ https://news.usc.edu/63669/fasting-triggers-stem-cell-regene...

manmal 10y ago
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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284325/
- fnord123 10y ago
  ))<>(( truly is the miracle cure.

reasonattlm 10y ago

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.

kakoni 10y ago
> 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?)

raydev 10y ago

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.

nostromon 10y ago
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.

mirimir 10y ago

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.

__d__ 10y ago

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?

pybank 10y ago
any diet which keeps your gut healthy will work. Lots of fruits and vegetables and seeds and probiotic works well. It works for me.
rsync 10y ago
"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.
ww520 10y ago
Probably avoiding inflammation help to avoid triggering the immune system.
55555 10y ago
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.
eigenrick 10y ago
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 :)

gwern 10y ago

> 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 https://en.wikipedia.org/wiki/Genetic_correlation#Disease Also notable for relatively large genetic effects from the large and difficult MHC gene.

pybank 10y ago

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 :-)

wellboy 10y ago

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.

hive_mind 10y ago
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)
rayuela 10y ago
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.

zzyx1yz 10y ago

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.

yladiz 10y ago
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-aspirin-advil http://www.vox.com/2015/8/17/9165189/best-painkiller-tylenol... 2: https://www.nytimes.com/2015/07/14/science/experts-urge-sparing-use-of-nonaspirin-painkillers.html https://www.nytimes.com/2015/07/14/science/experts-urge-spar...
- 10y ago

rdtek 10y ago

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 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.

derefr 10y ago
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 https://en.wikipedia.org/wiki/Cushing%27s_syndrome. CFS and Cushings are indeed probably related, though.
deleted 10y ago
[deleted]

gist 10y ago

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?

everyone 10y ago
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.
- gist 10y ago
  > 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!!!

spraak 10y ago

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.

SQL2219 10y ago

https://www.ncbi.nlm.nih.gov/pubmed/27417999 https://www.ncbi.nlm.nih.gov/pubmed/27417999

jostmey 10y ago

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 https://clients.adaptivebiotech.com/immuneaccess

Mz 10y ago

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.

tathougies 10y ago
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
- Mz 10y ago
  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.

alabamabill 10y ago

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.

thanatosmin 10y ago

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.

astrojams 10y ago

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.

geerlingguy 10y ago
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.

westvaflamer 10y ago

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.

olelu 10y ago

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.