[HN Gopher] Scientists discover a cause of lupus, possible way t...
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Scientists discover a cause of lupus, possible way to reverse it
Author : adamredwoods
Score : 735 points
Date : 2024-07-10 21:24 UTC (1 days ago)
(HTM) web link (news.feinberg.northwestern.edu)
(TXT) w3m dump (news.feinberg.northwestern.edu)
| ipunchghosts wrote:
| I wonder if any of these findings help us better understand
| me/cfs.
| galangalalgol wrote:
| It has been my hope that the number of me/cfs cases would
| finally drive enough research into autoimmune disorders in
| general, that we might finally figure it out. It seems very
| poorly understood from an outside perspective.
| PaulKeeble wrote:
| There is no funding and since Long Covid appeared the funding
| for ME/CFS has completely vanished. If Long Covid ME like
| illness is the same then ME/CFS is getting lots of research
| right now, on the other hand if they turn out to be different
| ME/CFS patients are getting completely ignored.
| thenerdhead wrote:
| Many ME experts are doing both. RECOVER is considering
| adding ME/CFS arms to its huge clinical trial platform.
| UCSF just added ME/CFS as a priority in their LIINC
| program.
|
| SARS-CoV-2 therapeutics won't work on both but immune cell
| based ones may given they haven't been tested in either
| yet.
|
| Both suggest a root cause of persistent viral antigen. Time
| will tell what works here.
| Elinvynia wrote:
| RECOVER is the biggest scam when it comes to research
| unfortunately. 90% of their studies are focusing on
| various form of "brain exercises", CBT therapy and
| exercise therapy. Things that are not only proven to not
| work, but actually proven to harm people with ME/CFS (of
| which long covid patients make up a large amount).
| thenerdhead wrote:
| They fund and do a lot of work beyond the horrible
| choices for initial RCTs. This fall we should hopefully
| see actual pharmaceutical interventions and a plethora of
| research they've been publishing.
|
| The more important parts of their programs are the omics
| and tissue biopsy programs.
|
| May they hopefully turn the ship...
| wpasc wrote:
| For what's it's worth, autoimmune drugs are amongst the
| highest grossing due to their cost. Rheumatoid arthritis,
| psoriasis, MS all do have a lot of study. I wouldn't say it's
| enough, but I don't think the prevalence of me/cfs alters
| anything due to the high prevalence of the other diseases.
| Immune disorders are definitely mysterious though
| PaulKeeble wrote:
| Maybe but the immune dysfunction goes further in ME/CFS its not
| just a problem of reduced CD4 and heightened CD8 (which are the
| two cell types they seem to be talking about) its a wider set
| of oddities that seem related to exhausted cells with not
| enough energy stuck in "there is infection near by" operation
| mode. It might help reduce symptoms that are caused by the
| imbalance so it would certainly be worth a trial when they work
| out the details.
| trhway wrote:
| >stuck in "there is infection near by" operation mode
|
| There are bunch of articles on successful treatment of CFS
| with methotrexate (which causes B-cells depletion whereis
| original CFS was associated in particular with B-cells over-
| presence after say viral infections/etc.)
| avgDev wrote:
| I've encountered an individual who had fibro, me/cfs, pots
| diagnosis. Turns out his small nerve fibers were fried by an
| antibiotic. His skin punch biopsy showed reduced fibers. This
| may not be the case in everyone, but SFN is extremely under
| diagnosed.
|
| He was a chemist, and he ended up healing all his symptoms with
| pirenzepine. If I recall correctly they did the skin punch
| biopsy again and his physician was stunned when they saw
| regrowth of the fibers.
|
| Today, WinSanTor is in stage 3 trials with their drug. They
| designed a cream with main ingredient being pirenzepine. They
| are targeting diabetes but the med appears to work for small
| nerve fibers as well.
|
| Small nerve fibers control so much that any time people have
| weird unexplained symptoms it should be explored.
| carynh wrote:
| > He was a chemist, and he ended up healing all his symptoms
| with pirenzepine.
|
| As in taking it orally for his SFN? That sounds equally
| fascinating as it sounds unlikely to me so I'd def love to
| read a bit more about it!
| sharpshadow wrote:
| Indeed Pirenzepine[1] is a muscarinic receptor antagonists.
| "The muscarinic receptor is a protein involved in the
| transmission of signals through certain parts of the
| nervous system, and muscarinic receptor antagonists work to
| prevent this transmission from occurring."[2] I could
| imagine that a let's say relaxed nervous system recovers
| better.
|
| 1. https://en.m.wikipedia.org/wiki/Pirenzepine 2. https://e
| n.m.wikipedia.org/wiki/Muscarinic_receptor_antagoni...
| avgDev wrote:
| Yes, he did take an oral dose, I believe it was higher than
| recommended dose, so some risk involved. I don't really see
| any studies on oral administration, but the new cream
| showed systemic relief.
| treprinum wrote:
| Isn't thiamine tissue deficiency at the bottom of dysautonomia?
| Potentially leading to Alzheimer, MS, ALS over long periods of
| time if untreated depending on one's genetics and the way their
| body tries to adapt to it? I understand nobody tracks this over
| 30 years though. I think it's low-risk to try to address long-
| term tissue B1/B2/B3 deficiencies first and see if it helps.
|
| "The initial symptoms of thiamine deficiency beriberi are those
| of dysautonomia [1], a broad term that describes any disease or
| malfunction of the autonomic nervous system. This includes
| postural orthostatic tachycardia syndrome (POTS), inappropriate
| sinus tachycardia (IST), vasovagal syncope, mitral valve
| prolapse dysautonomia, pure autonomic failure, neurocardiogenic
| syncope (NCS), neurally mediated hypotension (NMH), autonomic
| instability and a number of lesser-known disorders such as
| cerebral salt-wasting syndrome. Dysautonomia is associated with
| Lyme disease, primary biliary cirrhosis, multiple system
| atrophy (Shy-Drager syndrome) Ehlers-Danlos syndrome and Marfan
| syndrome for reasons that are not fully understood [2]. It has
| been hypothesized that the association of dysautonomia with so
| many different diagnoses is because a common form of
| dysautonomia originates from high calorie malnutrition. This
| leads to loss of oxidative efficiency (pseudo hypoxia) and
| subsequent disorganization of ANS controls that are mediated
| through the limbic system and brainstem."
| heartrending wrote:
| Yes for some cases and any doctor who knows anything about
| dysautonomia tests and treats for it. It's not root cause for
| many though because dysautonomia is a syndrome with
| potentially hundreds of reasons with the biggest being post-
| viral (autoimmune hypothesis) and EDS (vein elasticity
| hypotheis).
| thenerdhead wrote:
| Very likely. All of these illnesses are diseases of the cells.
| We're entering the golden age of immune cell science. You
| figure out what immune cells are causing disease and how to
| restore them.
|
| Here the T cells are imbalanced and a specific protein is found
| to regulate the imbalance but the interferon is countering the
| protein's effects. Now you can target that in many ways and run
| all sorts of clinical trials.
| eszed wrote:
| It seems to me that as we've gone layers deeper into organic
| processes we've repeatedly recapitulated Galenic theory:
| "rebalancing" more and more precisely-targeted "humours". Not
| saying this is bad - in fact, quite the contrary: it seems
| like a necessary stage on the way to more-sophisticated
| mechanitistic understanding.
| BenFranklin100 wrote:
| Autoimmune diseases, of which lupus is but one of many, are
| essentially black boxes. It's proven extraordinarily difficult to
| develop therapies in this area. As such, this is great news.
| Hopefully this research will encourage pharmaceutical and biotech
| companies to invest more resources into translating research
| findings into effective therapies.
|
| I haven't read the paper yet, so I can't comment on how this
| discovery might generalize to other autoimmune diseases, but one
| interesting bit about autoimmune diseases is that they tend to
| run in packs. This is suggestive there may be underlying
| mechanisms that are shared across autoimmune diseases.
| atombender wrote:
| The aryl hydrocarbon receptor (AhR), which is key to this
| discovery, appears to be super relevant to psoriasis, another
| autoimmune disease.
|
| AhR has been known for a long time, but it seems it's been
| somewhat mysterious until a series of recent breakthroughs. In
| 2022, an AhR inhibitor called tapinarof, sold as VTAMA, was
| launched, and has shown itself to be one of the most effective
| treatments for psoriasis to date. It's also unique in that it
| appears to have the ability to bring lasting remission. In the
| main clinical trial, patients who used VTAMA for one year and
| then stopped had a mean remission duration of 4 months until
| their psoriasis returned. That is unheard of for any topical
| medication used on psoriasis.
|
| Blocking AhR has also shown promise in treating MS [1].
|
| I haven't read the lupus paper, but often with papers like
| these, the "cause" turns out not to be the actual origin, but
| some cytokine or other protein that is more disease-specific
| than current drug targets. This lupus discovery appears to
| identify an imbalance that may be compensated for, but we still
| don't know what triggers the imbalance in the first place.
|
| In some cases diseases turn out to be a genetic fault, but my
| money is on pathogens acting as the initial triggering event,
| which then spins the immune system into a vicious cycle of
| autoimmunity. In psoriasis we see this with strep bacteria, for
| example, but the exact mechanisms are not well understood.
| However, the mechanism that makes psoriasis chronic _has_ been
| identified, a type of T-cell called a tissue-resident memory
| (TRM) T-cell. This type of cell acts as a kind of biological
| memory for infections.
|
| [1] https://newsroom.uvahealth.com/2023/02/15/multiple-
| sclerosis...
| BenFranklin100 wrote:
| Great comment, thanks. I'm looking forward to reading the
| paper.
| A_D_E_P_T wrote:
| Good post. One small correction: Tapinarof isn't an AhR
| inhibitor, it's an AhR activator, an agonist.
|
| Interestingly, tapinarof is a natural product -- a sort of
| bacterially-modified stilbene, a chemical cousin of
| resveratrol and pterostilbene -- and several other natural
| products also activate AhR. (Though perhaps not exactly in
| the same way.) The most potent and readily available of these
| is probably 3,3'-diindolylmethane.
| atombender wrote:
| Ah, thanks. I assumed tapinarof was an inhibitor, as the
| papers on its mechanism describe it as downregulating
| cytokines. It appears the exact mechanism isn't quite
| clear. Bissonette et al 2021 [1]: Tapinarof
| was found to bind directly to AhR, resulting in
| downregulation of inflammatory cytokines, regulation of
| skin barrier protein expression, and antioxidant activity
| ... In a T-cell polarization assay, tapinarof markedly
| inhibited T-cell expansion and Th17-cell differentiation
| and reduced the production of IL-17, while also reducing
| IL-17A and IL17F levels in a CD4 T-cell assay.
|
| It looks like tapinarof modulates the signaling behaviour
| of AhR, but so far the precise mechanisms are educated
| guesses.
|
| The story of tapinarof's discovery is fascinating. It's
| produced by a bioluminescent (!) bacillus _P. luminescens_
| that (quoting from the paper) "lives symbiotically within
| parasitic, soil-living entomopathogenic nematodes." It was
| observed in the 1950s that "the nematode did not putrefy
| once dead, in contrast to the rapid decay seen in the
| absence of the nematode," leading to the idea that the
| bacillus' metabolites had antimicrobial activity -- which
| turned out to include what is now synthesized as tapinarof.
|
| Coal tar is another semi-natural substance that is thought
| to act on AhR.
|
| [1] https://www.jaad.org/action/showPdf?pii=S0190-9622%2820
| %2932...
| A_D_E_P_T wrote:
| This open-access paper is pretty interesting with respect
| to mechanisms of action and how tapinarof differs from
| other stilbenes and AhR agonists: https://www.jidonline.o
| rg/article/S0022-202X(17)31543-9/full...
|
| And, yeah, good point re coal tar. AhR was once thought
| to be a toxin or junk receptor that activated liver
| enzymes for clearance of environmental waste and other
| chemical byproducts. The constitutive androstane receptor
| (CAR) and pregnane X receptor (PXR) were, at one time,
| thought to be very similar. That might still be the case
| with respect to PXR and CAR, but I'm thinking that the
| way to bet is that there's more to them than was once
| thought...
| Modified3019 wrote:
| I don't have any particular point to this post, just
| tossing out that resveratrol itself seems to be an
| antagonist of AhR, as it seems to compete with and block
| agonists.
|
| https://onlinelibrary.wiley.com/doi/10.1155/2019/5847040
|
| Also of note for those curious since I haven't seen it
| mentioned yet, Dioxins are potent agonists of AhR.
|
| My own interest in AhR is that it seems to play a role in
| metabolism. Lower levels of exposure to AhR activators
| seems to kick off a complicated series of effects that seem
| to ultimately lower metabolism, potentially being a factor
| in obesity. Higher levels of exposure to dioxins however
| results in wasting. AhR is poster child for hideously
| complicated biochemical relationships, so do be careful of
| simple summaries of exposure/response relationships.
|
| I would be cautious of AhR agonists though, I recall coming
| across a number of potential negative associations in
| regards to cardiovascular health.
| reissbaker wrote:
| AhR also appears to be significant in (mouse models of)
| rosacea, which is another chronic inflammatory disease:
| https://pubmed.ncbi.nlm.nih.gov/35926563/
| Centigonal wrote:
| If this approach touches Psoriasis and MS, there's a chance
| it'll be effective for IBDs too. That would be huge.
| ww520 wrote:
| Great info. Looks like the field has advanced tremendously.
| zeagle wrote:
| This is a great response. I tapped out something longer about
| not being as particularly impressed with the paper and the
| headline here on HN, but as an rheumatologist just wanted to
| say your last two paragraphs well said.
| maximz wrote:
| Hi @zeagle, sorry to hijack the thread (didn't see a way to
| DM you)
|
| I'm a PhD student working on a new lupus diagnostic blood
| test approach [1]. Hoping to steer the project towards true
| clinical needs.
|
| I'd love to ask for your feedback as a technologist +
| rheumatologist on a few lupus + RA diagnostic directions
| we're considering. Would they actually be useful in your
| practice?
|
| Would you be open to a quick chat? My email is
| maximz@stanford.edu.
|
| Many thanks!
|
| [1]
| https://www.biorxiv.org/content/10.1101/2022.04.26.489314v5
| dg08 wrote:
| Thanks for posting this. My doc just prescribed vtama for me
| a month ago and my psoriasis was gone in less than a week. I
| didn't even finish the sample tube he gave me. Far more
| effective than the steroid topical cream I was using before.
| I had no idea what vtama was until reading your post.
| atombender wrote:
| Yep. The nice thing about VTAMA is that it can be used
| continuously, unlike steroid creams. And it's unique among
| current topical meds in that it can provide sustained
| remission.
|
| It may be that VTAMA reduces TRM cells in the skin, which
| are the T-cells responsible for relapse. There's is an
| ongoing clinical trial right now called KNOCKOUT [1] that
| gives patients a "megadose" of Skyrizi, an IL-23 inhibitor
| that has, like VTAMA, been shown to reduce TRM cells. The
| idea is that a single huge dose could effectively cure
| psoriasis, or at least suppress it for a very long time.
| The results so far show that 83% of patients achieved
| complete clearance after six months, which was sustained
| throughout the trial period. I'm confident it will be a
| game changer. Here [2] is an interview with the main
| researcher.
|
| Among new psoriasis drugs, there is also Zoryve, a PDE4
| inhibitor (same mechanism as Otezla) as a cream or foam,
| which has a different mechanism of action.
|
| [1] https://www.hcplive.com/view/risankizumab-dose-clears-
| psoria...
|
| [2] https://www.hcplive.com/view/rizankizumab-knockout-
| study-and...
| kylehotchkiss wrote:
| I have a good feeling we're going to make a fairly big impact
| on cancer in our lifetimes with mRNA and other new discoveries
| in our lifetime. Autoimmune issues I'm feeling much less
| confident about. It seems like so many of the therapies are
| "turn down the immune system". I wish there was wider study
| into autoimmune derived mental health complications too. Maybe
| I'm totally wrong on this (and I'm very OK to be proven wrong)
| but maybe there's something to find here.
| roywiggins wrote:
| There is evidence that inflammation is among the causes of
| depression:
|
| https://wapo.st/3xHLze1
|
| > pro-inflammatory drugs can induce people to become
| depressed, which suggests a causative link. In one seminal
| study published in the New England Journal of Medicine,
| Miller and his colleagues conducted a double-blind study of
| 40 cancer patients undergoing treatment with interferon-
| alpha, an inflammatory cytokine.
|
| > Though none of the patients had depression to begin with,
| the inflammatory agent had a striking effect: Many became
| depressed, a finding that has been consistently replicated.
| Aerroon wrote:
| Is this why something like vitamin C can help with
| depression?
| theGnuMe wrote:
| What the mechanism?
| sharpshadow wrote:
| ,,Vitamin C supplementation attenuates the oxidative
| stress (lipid peroxidation) and inflammatory response
| (IL-6) to a single bout of exercise."[1]
|
| Vitamin C is essential and gets consumed by the body and
| needs to be replenished. For example during sickness the
| Vitamin C consumption is higher which could lead quickly
| to low levels.
|
| 1. https://pubmed.ncbi.nlm.nih.gov/32162041/
| lyall wrote:
| I don't believe there is any evidence that vitamin C
| reduces inflammation or helps with depression. Vitamin C
| is an antioxidant, not an anti-inflammatory agent.
|
| There is evidence that things that reduce systemic
| inflammation help with depression. Fish oil, or more
| generally a balanced omega-3/omega-6 intake is one
| example. Curcumin is another. However the effects are
| modest, which is probably to be expected with a condition
| as diverse as depression.
| funnym0nk3y wrote:
| However the causality is not clear. Inflammatory agents
| cause depression. And most depressed people have higher
| pro-inflammatory markers. It could also be the case that
| the inflammation is a result of something completely
| different.
| steelframe wrote:
| > Autoimmune issues I'm feeling much less confident about. It
| seems like so many of the therapies are "turn down the immune
| system".
|
| The immune system has many branches, and you can effectively
| deplete one branch of the immune system while preserving the
| other branches to fight infection. For example with MS a very
| effective treatment is CD20+ B cell suppression, as rituximab
| does. For many people diagnosed with MS this has been
| effectively a "cure," in the sense that while they need to
| continually deplete their CD20+ B cells, their disease
| doesn't progress in any meaningful way, and their immune
| systems remain largely able to fight infection.
|
| So we don't need to wholesale "turn down" the entire immune
| system for many autoimmune diseases. Rather, we need to
| surgically target specific parts of it and either suppress
| those parts or modify their behavior. Given the success we've
| seen with ritixumab and MS I'm more optimistic about our
| prospects for finding effective treatments for autoimmune
| conditions.
| hanniabu wrote:
| And all of this is controlled by your microbiome which is
| always ignored. I really wish more money was put towards
| researching that. It's literally our body's bioreactor.
| phito wrote:
| Is it really controlled by the microbiome or is it just a
| factor among many others?
| meindnoch wrote:
| Ah yes, the "gut" meme.
|
| No, the immune system is not controlled by our
| microbiome. The microbiome interacts with, and modulates
| the immune system in various ways, but it's hardly
| "controlling" it. There are germ-free animal models with
| sterile guts, which demonstrate that you can live without
| a microbiome - of course not 100% healthy, but they can
| still live and reproduce.
|
| The immune system is modulated by a lot of things:
| circadian rhythm, environmental stress, nutrients, etc.
| Yes, the gut microbiome is one of them. But let's be a
| bit more nuanced than Joe Rogan or The Liver King.
| MR_Bulldops wrote:
| I am here to restore your confidence about autoimmune issues.
|
| Recently (and still in many cases) "turn down the immune
| system" was the treatment for most cancers. Of course, the
| purpose of anti-cancer drugs isn't to turn down the immune
| system. It just happens that the side effect of drugs that
| target cancer cells also target other rapidly-dividing cells
| like hair, endothelial, and immune cells.
|
| In fact, chemotherapy drugs like Methotrexate are prescribed
| - at lower doses than for cancer patients - to people with
| Lupus and other autoimmune diseases.
|
| There are similar challenges with cancer and autoimmune
| diseases, so progress in one might help progress in the
| other.
|
| From the article: "They are now working to find ways to
| deliver these molecules safely and effectively to people."
| This is a challenge for many potentially effective cancer
| treatments as well.
| spondylosaurus wrote:
| And some autoimmune treatments started out as failed
| attempts at developing cancer treatments, too. Happy
| accidents!
| kylehotchkiss wrote:
| I <3 all the happy accidents that allow us to live much
| healthier and longer lives than the generations before us
| idunnoman1222 wrote:
| Killing quickly dividing cells as a way of modulating
| immune system is 'turn down the immune system'
|
| Just as antivirals are actually 'stop cell division'
|
| Neither of which inspire any confidence
| MR_Bulldops wrote:
| It should inspire confidence that we have moved beyond
| that for many types of cancer. And if it can be done with
| cancer treatment, we are closer to doing it with
| autoimmune and anti-virus treatments.
| fnord77 wrote:
| > Autoimmune diseases, of which lupus is but one of many, are
| essentially black boxes.
|
| Hardly. Treatments are down to the kinase level these days,
| which is just one step away from the gene transcription
| factors.
|
| In fact it is pretty amazing how well understood the complex
| mechanism of autoimmune diseases are.
| _glass wrote:
| Yes, for Hashimoto's thyroiditis there seem to be some
| approaches: https://pubmed.ncbi.nlm.nih.gov/38621508/ Let's see
| how this plays out.
| trhway wrote:
| On one side we have in this article :
|
| " insufficient activation of a pathway controlled by the aryl
| hydrocarbon receptor (AHR), which regulates cells' response to
| environmental pollutants, bacteria or metabolites. Insufficient
| activation of AHR results in too many disease-promoting immune
| cells, called the T peripheral helper cells, that promote the
| production of disease-causing autoantibodies.
|
| To show this discovery can be leveraged for treatments, the
| investigators returned the aryl hydrocarbon receptor-activating
| molecules to blood samples from lupus patients. This seemed to
| reprogram these lupus-causing cells into a cell called a Th22
| cell that may promote wound healing from the damage caused by
| this autoimmune disease.
|
| "We found that if we either activate the AHR pathway with small
| molecule activators or limit the pathologically excessive
| interferon in the blood, we can reduce the number of these
| disease-causing cells,"
|
| On the other side quick search on AHR activation brings for
| example cancer related stuff like this :
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10570930/
|
| "AHR activation to promote tumor cell intrinsic malignant
| properties and to suppress anti-tumor immune responses [14],
| [17], [18]. Specifically, the AHR drives cancer cell migration,
| invasion, and survival, regulates cell cycle progression and
| promotes cancer stem cell characteristics [14], [19], [20], [21],
| [22]. Simultaneously, it inhibits anti-tumor immunity "
|
| Human body by its complexity and our lack of understanding of it
| sometimes reminds the codebases i've worked on :)
|
| In that rabbit hole of articles on AHR there is also :
|
| https://www.nature.com/articles/s41423-020-00585-5
|
| "The aryl hydrocarbon receptor and the gut-brain axis"
|
| which in particular discusses what looks to me (i'm not a doctor)
| like a connection/correlation : gut microbes -> AHR ->
| glioblastoma.
| elcritch wrote:
| Both reactions make sense to me. Too much AHR activation
| suppresses immune response leading to cancer proliferation due
| immune cells not culling cancerous cells, but too little leads
| to auto-immune conditions. It's definitely like a large sloppy
| code base with lots of implicit overlaps and global effects.
| wizzwizz4 wrote:
| If all you have is a hysteresis, everything looks like a
| chemical imbalance.
| trhway wrote:
| seems to be saying just that :
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9140757/
|
| "Autoimmunity and cancer as two sides of the same coin. The
| figure depicts how tuning of immune system regulatory
| mechanisms can contribute to autoimmunity, health, or cancer
| development."
|
| One can wonder if induction of some autoimmune condition may
| be used as a treatment of some cancers.
| worstspotgain wrote:
| > One can wonder if induction of some autoimmune condition
| may be used as a treatment of some cancers.
|
| This is one of the bases of the checkpoint inhibitor
| revolution in immunotherapy. [1] The checkpoint is there to
| prevent immunity excesses. Temporarily turning it off is
| effectively an autoimmune disorder [2], one that can take
| out the cancer.
|
| [1] https://en.wikipedia.org/wiki/Checkpoint_inhibitor
|
| [2] https://www.frontiersin.org/journals/immunology/article
| s/10....
| zeagle wrote:
| Similarly checkpoint inhibitors can cause autoimmune
| conditions that look a lot like lupus, arthritis,
| inflammatory bowel, endocrine disorders, etc. and it's
| sometimes difficult to be able treat both as it can be
| antagonistic. E.g. one of the checkpoint inhibitors has
| the opposite effect of a drug used to treat rheumatoid
| arthritis.
| beekaywhopper wrote:
| script writers for House are shaking in their boots
| nadermx wrote:
| "You stash your drugs in a lupus textbook?" "It's never lupus"
| shepherdjerred wrote:
| Every Time "It's Not Lupus"
|
| https://youtube.com/watch?v=uXOxXnZoYGQ
| adriand wrote:
| Out of sheer boredom, I started watching this, and got as
| far as an argument about whether or not some set of
| symptoms was lupus. Then I closed my laptop, tired of
| wasting my time. I sat quietly on the couch in my living
| room for a moment. My wife was watching television in the
| next room over, at a volume where the dialogue was clearly
| audible, and what do I hear but a woman state, "At that
| time, I was diagnosed with lupus"!
| dylan604 wrote:
| Next, you'll see it appear in your social targeted ads.
| <cueOmninousMusic>
| jonplackett wrote:
| 90% of House MD plots ruined
| ramon156 wrote:
| I don't even need to read the article, the answer is more mouse
| bites
| m463 wrote:
| but it was never lupus anyway. mostly.
| Tagbert wrote:
| It was Agatha, all along.
| orbat wrote:
| Maybe if one more painfully unfunny person repeats this tired
| joke that we see every time lupus is mentioned, it'll finally
| be funny. Let's find out!
| johnnyanmac wrote:
| To each their own. was a funny and nostalgic throwback. I
| haven't watched House in 15 years and haven't even seen it
| referenced since pre-pandemic.
| AdmiralAsshat wrote:
| To be fair, House's plots usually reiterated, "It's never
| Lupus."
|
| (And the one time it actually was had a rather disappointing
| reveal, IMO)
| fragmede wrote:
| Time to bring it back for an special episode where House say's
| it's not lupus, but it turns out it is and they find out thanks
| to an intern, and then they cure it using this new therapy.
| casper14 wrote:
| My girlfriend has lupus, so I showed her the article. It sparked
| a bit of hope. She has a science background and always asks in
| awe "how do you find such good papers on the day they get
| released". She's not really the HN audience though :*)
| JaggerFoo wrote:
| Nick Cannon, host of "The Masked Singer" America, would be glad
| to hear this. He has Lupus.
|
| Now all he needs is a cure for poor "Pull-Out" game syndrome.
|
| Cheers
| hsuduebc2 wrote:
| Let's hope that from eczema to lupus all these mysterious
| autoimmune diseases would be at least explained if not
| eradicated.
| riley_dog wrote:
| Agreed. I sure would love to eat gluten.
| wkcheng wrote:
| I wonder if allergies can eventually be fixed somehow as well.
| There has to be an immune or autoimmune reason why some people
| have tons of allergies and other people are perfectly fine.
| theGnuMe wrote:
| Allergies are caused by an overactive immune system. The way
| to overcome them is to train the immune system by exposing
| yourself to low doses of the allergen. Doctors do this and
| it's called allergen immunotherapy. Interestingly this has
| been done since 1911.
|
| https://www.nature.com/articles/s41577-022-00786-1
| anonzzzies wrote:
| I used to be allergic to 100s (I could not even walk 1
| meter of certain weeds and I would get blisters etc) of
| things until I moved away from my country 20+ years ago. I
| suddenly was allergic (as far as I know still now) to
| nothing; I accidentally came in contact with some of the
| worst allergens of old (as I live in nature since then) and
| they did nothing to our surprised. My wife who was allergic
| to seafood (passing out to needing epi levels) and that's
| gone too, shortly after the move. I don't know why; our
| doctor then didn't know, but we chalked it up to stress; we
| went from depressing commute ratrace city jobs to sitting
| in a forest in nature doing whatever we liked. I work more
| hours now but they are stressless. Don't know whatever is
| true, but one mistake I made was not moving earlier.
| lynguist wrote:
| From where to where did you move then?
| anonzzzies wrote:
| NL -> ES
| emacsen wrote:
| It sounds like you moved to Stardew Valley.
| anonzzzies wrote:
| Certainly looks and feels like it
| hanniabu wrote:
| Largely depends on gut microbiome
| hliyan wrote:
| I've had some sort of autoimmune thing hitting me almost every
| decade of my life (and then clearing up): eczema, asthma,
| vitiligo and most recently psoriasis. Usually quite mild, but I
| worry that the next one in the progression will be arthritis.
| Most doctors' explanations can be summarised into a shrug.
| Would be a relief to know what's going on in there.
| psychopomp wrote:
| Autoimmune disorders all have a common root of gut
| dysfunction. I suffered from chronic inflammation for five
| years, the ultimate solution was a double capsule probiotic
| and eating more fiber. Most probiotics have a single capsule
| that opens in the stomach and all those CFUs are killed by
| stomach acid.
| hanniabu wrote:
| Sad to see you're getting down voted, shows how far behind
| everyone is
| xlbuttplug2 wrote:
| Any particular strain/brand that helped for you?
| psychopomp wrote:
| I use and recommend Seed https://seed.com
| spondylosaurus wrote:
| Hey: do you have any stomach problems? Because that was me
| (up to and including the arthritis part) and then my "IBS"
| turned out to be Crohn's disease and once I started treating
| that 90% of my other shit vanished. Things were so bad back
| then that I was seriously considering a hip replacement to
| make the pain stop, but today I just hopped off the exercise
| bike and feel totally fine.
| xlbuttplug2 wrote:
| What was the treatment in your case?
| spondylosaurus wrote:
| At first, a mix of mesalamine and oral steroids; then I
| graduated to Remicade and a low dose of methotrexate to
| stop my immune system from creating antibodies against
| the Remicade. And that's basically it.
|
| I should also note that even when I was _only_ taking
| mesalamine (a drug that works in your GI tract and
| basically nowhere else), my arthritis pain improved
| drastically, so it wasn 't just the result of steroids
| having a general anti-inflammatory effect. Treating my
| intestines alone was enough for me to stop walking with a
| cane.
| hliyan wrote:
| Oh dear, I hope not. I do tend to have the occasional need
| to visit the mens room several times a day (but only at a
| level where it's just the mildest of inconveniences). I'd
| be really worried if it was IBS. The prospect of that
| getting "upgraded" to Crohn's is downright terrifying.
| Maybe I'll ask my GP next time.
| spondylosaurus wrote:
| It could very well not be that, but I always feel
| compelled to mention it just in case I can spare someone
| else the same "three years of confusion to figure out
| what was wrong" fate that I suffeed :P
|
| And even more broadly speaking, if your immune stuff does
| progress, the good news is that treating the biggest
| baddest one (in my case, the Crohn's) usually treats the
| myriad smaller ones with it. So if you ever end up
| arthritic enough to get treated for that, the treatment
| should knock down your psoriasis and other stuff too!
| junto wrote:
| Several times a day especially if it feels urgent, is
| unusual. If you see any blood in your stool then visit a
| doctor as soon as you can.
| spondylosaurus wrote:
| ^ Likewise if certain foods set you off _and_ those foods
| are actually "good for you". If you feel like crap after
| eating a ball of grease, that's one thing, but it turns
| out leafy greens aren't supposed to give you a nuclear-
| level stomachache.
| neom wrote:
| What type of vitiligo?
| alexey-salmin wrote:
| There is a study that claims that genes associated with
| autoimmune diseases increased survival during the black death
| epidemic by 40% and frequency of these genes increased a lot in
| the 14th century Europe [1]. I haven't yet seen independent
| confirmations but I can imagine that paranoid immune system can
| be beneficial depending on circumstances. If we eradicate
| autoimmune diseases then there's a chance we won't survive the
| next big pandemic.
|
| [1] https://www.nih.gov/news-events/nih-research-matters/how-
| bla...
| wyldfire wrote:
| > If we eradicate autoimmune diseases then there's a chance
| we won't survive the next big pandemic.
|
| IMO it seems more likely that we'd find effective treatment
| which mitigates symptoms of autoimmune disease than a
| treatment that irreversibly eradicates the disease (including
| from subsequent generations, even?).
| erichanson wrote:
| My sister just got diagnosed with lupus.
| bionhoward wrote:
| Anybody have a PDF? Would love to learn more!
| zeagle wrote:
| This group presented an abstract at ACR in the fall prior so it's
| nice to see it published now.
| https://acrabstracts.org/abstract/cxcl13-t-cell-differentiat...
| if you don't have journal access to the Nature article.
|
| Kudos to them for landing a nature publication but I really would
| temper this level of excitement (??a top link on HN??) at a basic
| science research publication discussed in a press release from a
| university highlighting it's researchers.
|
| My read is it is down to decreased CXCL13 expression and type I
| interferon expression in blood of a small number of patients,
| controls, and cell culture which gives direction for further
| study. CXCL13 was published as a possible RA biomarker half a
| decade ago and crickets since then clinically. Is it causal or a
| consequence of chronic inflammation? Type I interferon signature
| has been looked at heavily for over a decade and is clearly
| relevant in SLE but still only just over about half of lupus
| patients have it and the signature is by definition broad
| expression of hundreds of genes that affect innate and adaptive
| immune system components.
|
| We DO need better treatments for lupus patients but it's a very
| variable disease in severity, clinically, and in terms of
| biomarkers making it difficult. I mean the best drug that
| everyone with lupus should be on barring a good reason is an old
| antimalarial (that doesn't treat COVID) and then we add to it. If
| you are interested in other new-ish therapies for lupus take a
| look at anifrolumab, belimumab, voclosporin, and even newer CAR T
| stuff. Important to consider the manifestations being treated
| with those in the studies e.g. belimumab with skin, joint, kidney
| but nothing for hematologic/cardiac/neurologic manifestations.
| Kalanos wrote:
| I don't have much context, but the identification of the AHR
| receptor for the CXCL seems like the exciting part.
|
| From what I understand, it is easy enough to design an antibody
| once you know the right receptor to target
| fasa99 wrote:
| Exactly. When our car doesn't run well, a car with perhaps
| 20,000 parts, we take it to the mechanic who says "yup, issue
| was your spark plug, fixed". And even then, of course, the car
| issue may have been multifactorial. Maybe the spark plug failed
| because the fuel/air mix was off, for example, the spark plug
| was the symptom.
|
| But then we leap from the car with 20,000 parts to a body with
| a trillion cells each cell with a trillion molecules. The
| calculus of the fuel/air mix and the spark plug has now been
| blown out of proportion, as challenging as conceiving a 20
| dimensional manifold or the size of the universe. And so my
| reservation with a paper like this, and in general, is people
| say, "yup, sure was the spark plug" and then get accolades and
| a Nature paper, when the core issue was the air fuel mix, the
| air fuel mix that is, times a trillion cells, times a trillion
| molecules.
|
| And I can't blame the authors. No shame in shooting for Nature
| and succeeding. No shame in these simplistic models, each one
| takes us a step further. But somewhere along the lines we're
| going to have think about the R&D of the big picture in non-
| hand-wavey ways.
| _Adam wrote:
| > But somewhere along the lines we're going to have think
| about the R&D of the big picture in non-hand-wavey ways.
|
| How?
| aftbit wrote:
| Superintelligence
| pixl97 wrote:
| Probably not a great solution....
|
| When dealing with code we say refactor and simplify.
| Superintelligence my (rightfully) consider us too
| complicated and a 'big ball of mud' and replace us with
| version 2.0.
| nanomonkey wrote:
| Likely nanotechnology. Sensors that can reside in your body
| and give up to the moment details, and chemical factories
| that we can programmatically make adjustments to the body's
| existing pathways (reprogramming the immune system, etc.).
|
| In other words, better integration and faster feedback
| loops.
| pixl97 wrote:
| Just wait till some small percentage people have random
| immune responses to the nanotechnology just creating
| another feedback loop in the system.
| the_sleaze_ wrote:
| The thing about a car is when the bumper gets detached you
| can't just strap it down to the front of the car and wait
| until it reattaches itself.
|
| It may be (surely is) that something like lupus is
| multifactorial and impossibly complex, but knocking out the
| largest cause of something can be a reliably cure.
|
| Look at antibitoics - a truly "replace the sparkplug" fix for
| let's say treating a MRSA infection. Doesn't treat cell
| damage, doesn't treat inflammation, doesn't treat pain,
| doesn't treat hormonal imbalance through the body. It doesn't
| even target the specific infection it kills indiscriminately.
| Yet "give them antibiotics until the MRSA goes away, or if it
| doesn't give them more antibiotics until it does" it super
| hand-wavy.
| Finnucane wrote:
| Sure, a car has a lot of parts, but when one of them is
| leaking oil where it's not supposed to, you don't have to
| check every part to see where the problem is.
| w10-1 wrote:
| Yes, pathways are complex and adaptive, but as I read the
| abstract (thank you!), they're suggesting a treatment path.
|
| The potential treatment is that the protein JUN can block IFN's
| increasing CXCL13 pathologically.
|
| It's testable in that JUN itself can be produced and delivered
| during acute phases to reduce flares, and could itself be a
| therapy.
|
| More lasting gene diagnostics and therapies may come from
| checking for dysregulated genes in the pathway and injecting
| genes to produce JUN.
|
| It's not promising, though, to the extent JUN wouldn't address
| an underlying IFN dysregulation.
| notheyarent wrote:
| they aren't cell diseases. It is plant toxins either leaking into
| the blood stream through intestinal permeability or a problem
| with peoples livers being fatty and not able to do their job
| anymore resulting in the bodies inability to remove plant toxins.
| The toxins cause an immune reaction wherever they build up ,
| rheumatoid arthritis if it's the joints of the legs and arms etc.
|
| Plant toxins include pesticides, fungicides, herbicides, both
| human created and sprayed on and natural ones to stop animals and
| bugs eating them. They also include glysophate
|
| Thousands of people on Reddit have put Rheumatoid arthritis and
| other Auto immune diseases into remission using the carnivore
| diet. Ie manually removing Plant toxins from their food and not
| letting the toxins enter their damaged bodies
| geewee wrote:
| If these toxins build up in animal cells - why would you eating
| meat (that must then have a much higher concentration) not
| expose you to the same toxins?
| seaal wrote:
| The trick is you must eat meat that only ate meat!
| geewee wrote:
| It's meat all the way down!
| colordrops wrote:
| This idea that plants are toxic and meat is healthy is absurd
| in the extreme. Historical evidence shows humans at mostly a
| plant based diet for most of our evolution. And the various
| large and strong herbivores are completely contradictory to
| your thesis. It's similar to flat-earth in how easy it is to
| debunk.
| idunnoman1222 wrote:
| the reason that this bro science works for people is that
| change can effectuate change EG what you're doing isn't
| working change what you are doing and that can have affect
| with anything, mind, immune system, you name it, I had RA and
| it went into remission when I just changed my diet and
| started eating totally different foods. Now we can say that
| those foods were the cure all and that everyone eat them, but
| maybe just change your life a bit You're doing right now
| ain't working
| theferalrobot wrote:
| Wouldn't then the cure just be to eat organic food, rather than
| meat of animals that were fed way worse crap than the average
| person? The whole premise makes no sense...
| tuennesje wrote:
| I believe no one diet works equally for every single
| individual with Autoimmune conditions. For some, a plant-
| based diet reduces symptoms, for others like Jordan B.
| Peterson, and his daughter (I believe she suffered from RA) a
| purely meat-based diet reduced all of their symptoms.
| Personally, I struggle with Hashimotos, Ankylosing
| Spondylitis and Crohn's Disease and have to stay away from
| sugary foods, alcohol and caffeine or else one of the
| conditions will flare up. Any type of meat is fine for me
| however.
| aroopchandra wrote:
| For me, it was the opposite. Cutting out meat and eating a lot
| of organic greens helped calm my immune system and reduce
| inflammation. In my experience, meat increased my inflammation,
| while greens decreased it. I think everyone is different, and
| it's not hard to test on yourself if you have noticeable
| symptoms like joint pain, as I did.
| atombender wrote:
| Funnily enough you have another poster [1] saying the exact
| opposite, that meat makes their symptoms worse, and eating
| plant foods makes their symptoms go away.
|
| Whenever the carnivore diet comes up as a panacea (which it
| does, a lot), I wonder if people tried anything else. Did they
| try reintroducing plant foods to test their hypothesis?
|
| Personally, I bet that it's not the diet itself that helps in
| most cases, but that the very act of changing one's diet
| radically alters the gut microbiome. People with autoimmune
| diseases usually have a dysbiotic gut flora, so it makes sense
| that a radical change would "reset" it. However, this would
| suggest that reintroducing foods should work, unless you
| reintroduce things that bring back the imbalance.
|
| Anecdotally, my psoriasis disappeared after I switched to a
| strict vegetarian diet. I can't prove it, though, so I don't go
| on Reddit making unscientific claims I can't back up with
| evidence.
|
| [1] https://news.ycombinator.com/item?id=40937383
| dpeckett wrote:
| Fascinating stuff, it's interesting to read that the main ligands
| of the AhR (Aryl hydrocarbon receptor) are PAHs (Polycyclic
| aromatic hydrocarbons) and that activation of the AhR receptor
| improves the markers of Lupus.
|
| Polycyclic aromatic hydrocarbons are nasty, carcinogenic,
| molecules that are commonly found in smoke, tar, and char.
| Basically burnt organic matter. On the other side of the coin AhR
| is also activated by a bunch of Polyphenols, which are found in a
| variety of plant derived foods.
|
| Does this mean, it is possible that Lupus (and Psoriasis) are
| diseases of affluence caused by processed food (low in
| Polyphenols), and a reduced exposure to smoke byproducts in the
| environment?
| NetOpWibby wrote:
| That's wild, if true.
| ta988 wrote:
| Smoking is supposed to be a risk factor so who knows.
| dpeckett wrote:
| Man biology is weird, yeh it looks like for Lupus and
| Psoriasis it pretty much doubles the risk of developing it.
| caddemon wrote:
| There's definitely a genetic component but it would be
| interesting if those environmental factors impacted prevalence
| or severity.
|
| Autoimmune disorders in general might be worse/more common in
| countries where kids grow up in clean environments. There's
| already some discussion on this with regard to allergies that I
| think has some credibility.
| biosboiii wrote:
| Whatever, it's never Lupus.
| marton78 wrote:
| Sometimes it is, a dear friend of mine is suffering from it.
| It's a really bad illness.
| instakill wrote:
| Came here for the House comment. Amazing how that show owned
| this word
| andruby wrote:
| I have a t-shirt with that comment. A few years later, a
| family member gets diagnosed with Lupus. I stopped wearing
| the t-shirt.
| greenish_shores wrote:
| Somebody pls upload this
| https://www.nature.com/articles/s41586-024-07627-2 on sci-hub.
| ck2 wrote:
| try LibSTC
| ta988 wrote:
| It says "Sorry, the file is absent :("
| ck2 wrote:
| I am sure it will be there eventually.
|
| This is a preprint of the abstract to the paper and I know
| there are some very smart people on HN but if you can grasp
| this you are in an entirely much higher orbit
|
| https://acrabstracts.org/abstract/cxcl13-t-cell-
| differentiat...
|
| What's interesting is that AHR is also involved in Covid
| infections so this will highly likely be further
| researched.
| humanlity wrote:
| My father got this, I truly hope that can cure he
| rpaddock wrote:
| The Nightshade family of plants, which are very common in our
| diets, can mimic the symptoms of Lupus. That food sensitivity
| needs ruled out when diagnosing the cause of Lupus.
| ta988 wrote:
| Do you have research that shows that? What I've read is that
| there was no real evidence of that.
| weberer wrote:
| He's likely referring to solanine poisoning.
|
| https://en.wikipedia.org/wiki/Solanine
| rpaddock wrote:
| Yes. Also "inflammation and pain in the joints" can be
| mistaken for Rheumatoid Arthritis (RA).
|
| We discovered the hard-way that my late wife had issues
| with this. Multiple doctors diagnosed her with both RA and
| Lupus. When we got the Nightshades out of her diet and
| switched to more natural based cleaning products, such as
| Hemp based soap, shampoo and vinegar for cleaning, her
| symptoms of RA and Lupus went away. An good allergist finds
| things like this.
| primer42 wrote:
| Someone page Dr House!
| mayormcmatt wrote:
| It's not lupus!
| aroopchandra wrote:
| I was diagnosed with lupus a few years ago. My mom also had it
| and passed away after 10 years due to complications. My initial
| symptoms were severe joint pains, which made daily activities
| difficult. This happened during the COVID lockdown, which helped
| me maintain my job.
|
| I did a lot of research and tried various treatments. Functional
| medicines and expensive vitamins didn't help. I read about long-
| term fasting and tried different routines at home. I did several
| 1-day, 3-day, and 7-day fasts. During the 7-day fasts, my pain
| disappeared, but it returned once I resumed eating. This led me
| to believe that food was causing inflammation.
|
| Previously, I ate a lot of lean meat and occasional red meat. I
| then cut down to eating meat once a week and ate mostly raw leafy
| vegetables the rest of the time. My pain would come back after
| eating meat and decrease over the week. I eventually stopped
| eating meat entirely and consumed a ton on greens, and within six
| weeks, I was pain-free.
|
| I also tried Benlysta for months, but it didn't help much.
| Vegetables seemed to reduce my inflammation more effectively. I
| stopped taking Benlysta but continued regular blood tests. After
| a year, my doctor agreed I could stop the medication. I've been
| in remission for the last two years with no pain or inflammation.
|
| I hope this helps, though it's just my personal experience.
| wholinator2 wrote:
| I have crohn's disease which is also autoimmune and directly
| related to ingesting certain things. I think a lot of
| autoimmunity has to do with intestinal bacteria and their
| relationship to our innate immune system. And to a lesser
| extent it seems that almost every aspect of life is effected by
| what we eat, how we feel, how we act, how we grow and die.
| Maybe in 100 years we'll have fecal tests and bacteria pills to
| catch and prevent a paradigm shifting amount of ailments.
|
| I know I've tried tons of different diets and exclusions and
| things. I've got a pretty good list in my head of what i can
| and can't eat but it seems to change q bit every couple years.
| I used to not tolerate bread but eat sugar and it seems to have
| switched some time in the last decade. Anyways, i wish you luck
| with your journey and I'm glad you've found something that
| works for you
| aroopchandra wrote:
| I got fecal tests and used expensive supplements and vitamins
| as recommended by a functional doctor, but they didn't help.
| I looked into how immune suppression medicines like Benlysta
| work and tried to mimic their effects naturally to get relief
| and hopefully stop using medicine. I think food can help
| manage many side effects of immune-related diseases, even if
| it can't cure them.
| lhoff wrote:
| You might want to try the Wim Hof Method. I don't believe
| in everthing Wim Hof attributes to his method but when it
| comes to immune response, there is scientific evidence that
| it does indeed result in an increase of IL-10, which is
| anti inflammatory.
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034215/
| nanomonkey wrote:
| Quite a few of my friend's that were diagnosed with chron's
| disease found out that the main culprit seemed to be flour
| and other foodstuff that had been treated with glyphosate
| (Roundup). After switching to sourdough bread made from
| organic flours, and similar choices for masa harina
| (nixtamilated corn) their issues went away. This was after
| years of not eating anything with fiber, gluten, or
| nightshades.
|
| Their theory was that the herbicides would kill off their
| gut's natural biome and cause an inability process
| carbohydrates, fiber and maintain a intestinal mucus layer.
|
| YMMV...but just passing along what has worked for a few of my
| friends.
| skrebbel wrote:
| > after years of not eating anything with fiber,
|
| You mean they avoided vegetables entirely?
| blix wrote:
| My doctor told me after an intestinal surgery that I
| would never be able to eat vegetables again.
| novok wrote:
| There is also other things like brominated flour which is
| illegal in brazil, the eu, india and canada but not the USA
| geoelectric wrote:
| California banned potassium brominate as a food additive
| last year, but it doesn't go into effect until 2027.
|
| The FDA _finally_ banned brominated vegetable oil very
| recently so maybe they'll get to the rest of it too.
| Assuming they can make rules anymore, anyway.
| datavirtue wrote:
| Hmmm...I recently had my gut biome die off but could not
| identify any suspects. I bake a lot.
|
| The most noteable thing about the whole experience was how
| amazing my bowel functions are after having to restore the
| gut biome. They are functioning far better than the many
| years before I experienced the die off. I used pills from
| Amazon that had good reviews (Physicians Choice) with a
| strict raw vegetable diet, and they definitely worked. I
| noticed another uptick in bowel function after taking some
| pills my wife purchased that had more strains. You can't
| just eat yogurt and dust off your hands.
| smm11 wrote:
| Happened with my "gluten-free" wife, too. No issue with
| legit sourdough.
| COGlory wrote:
| I'm curious if you've looked into N-Glycolylneuraminic acid and
| whether that could be the issue? Does chicken cause an issue
| for you?
|
| I'm sorry to hear about your Lupus diagnosis, and glad it's in
| remission. My doctor wanted to diagnose me with Lupus due to
| the facial rash and arthritis/joint pain, but I came back
| negative in all the bloodwork, which I think means about 98%
| sure don't have it. I found that I can treat the joint pain
| effectively with SSRIs (Fluoxetine, 20 mg is enough to wipe it
| out after a few weeks). My mother has MCAS and my sister and
| aunt have UC, so I feel like I'm tripping through a minefield
| trying to navigate whatever autoimmune issue this is....and I
| have a PhD in biochemistry.
| aroopchandra wrote:
| I haven't looked into N-Glycolylneuraminic acid specifically.
| For me, all types of meats, including eggs, chicken, and
| lamb, increased my inflammation levels. From what I
| understand, correctly diagnosing immune diseases can be quite
| challenging. My doctor once said it's more of an art than a
| science. Because my mother had lupus it was easy in my case.
| While I'm not against medications, they often come with side
| effects. For example, immunosuppressants are necessary for
| high inflammation but can increase the risk of cancer. Even
| SSRIs have side effects.
|
| When I had pain, I tried both medications and dietary
| changes, using an engineering mindset to isolate variables.
| Although I listened to my doctor, I also took matters into my
| own hands and did my research. My doctor initially doubted
| that changing my diet would help but did recommend the
| Mediterranean diet. He still doesn't believe that food helped
| since there's no clinical research backing it, and it's not
| something commonly taught in medical schools.
|
| The best part about experimenting with food is that it's easy
| and inexpensive to test on oneself. In my case, I was
| fortunate that my joint pains allowed me to observe the
| effects of my dietary changes within a week or less.
| Initially, I expected results in a day or two, but I soon
| realized that I needed to experiment for at least a few weeks
| to see the full effects. These days, I consume small
| quantities of eggs every few weeks and haven't noticed any
| significant increase in inflammation.
| tremon wrote:
| _I came back negative in all the bloodwork_
|
| One of my friends has APLS (antiphospholipid antibody
| syndrome), which can also occur as a secondary symptom of
| Lupus. All of her blood tests always come back negative due
| to the way APLS affects coagulation -- unless the bloodwork
| is cultured for at least two days. So if you have reason to
| suspect the test results may be incorrect, ask them to re-do
| the bloodwork as a long-term culture rather than the normal
| fast screening.
| maayank wrote:
| What do you eat for protein in the current diet?
|
| What was your experience with fish?
| aroopchandra wrote:
| I eat a lot of legumes such as lentils, chickpeas, black
| beans, and peas. I also include tofu made from soy, and nuts
| like almonds, peanuts, as well as seeds like chia, flaxseeds,
| and hemp. I use plant-based protein powders too specifically
| (https://lovecomplement.com/products/complement-organic-
| vegan...) when I drink green smoothies (3 to 4 meals a week).
|
| Green leafy vegetables also has a lot protein (Kale, Broccoli
| and Brussels).
|
| I use supplements for B12 which is missing from vegetable
| foods.
|
| I used to eat fish but when I stopped all animal products I
| gave up fish as well. I guess if I have fish once in a while
| it won't hurt me but I have a tendency to overdo it. The main
| thing for me was to reduce the inflammation when I had the
| imbalance. This meant stopping everything I thought might
| cause inflammation until it went away.
|
| My diet was also free of all salts, sugars and oils for few
| months though I do use them now.
| bumby wrote:
| > _I use supplements for B12 which is missing from
| vegetable foods._
|
| Just in case you're looking for an inexpensive vegan whole
| food source, seaweed sheets (like those used in sushi) have
| a relatively high amount of B12. I took a look at the brand
| in my pantry and it has 60% RDA per sheet.
| aroopchandra wrote:
| Thats a good idea. I will for sure add it to my snacks as
| I actually like seaweed
| schlick wrote:
| Maybe a crazy take here but it sounds like the Lupus
| actually made you healthier?
|
| Either way congrats on finding a way towards living a happy
| and healthy life, props to you.
| aroopchandra wrote:
| For sure it did make me healthier and know my body better
| xdrone wrote:
| In the vegan community there is lost of discussion of animal
| products causing auto immune issues. A compromised gut lining
| will let intact animal proteins into the body. The immune sees
| the animal foreigners but also attacks our body; us being
| animals too.
|
| Type 1 diabetes, aka childhood diabetes, is thought to be from
| casein in A1 milk; where the immune system attacks the beta
| cells of the pancreas. Seems plausible to me; rates of dairy
| consumption seem to correlate with type 1. (see Finland).
| aroopchandra wrote:
| I also read this in multiple places and trusted it. At least
| that's how I internalized my condition when I started the
| experiment.
| valgor wrote:
| Funny enough, I mentioned not eating meat on another
| hackernews thread today and someone told me I'm going to get
| an autoimmune disease.
| loceng wrote:
| Did you ever do an Igg food sensitivity test-food panel to
| check if there were any inflammatory Igg markers from specific
| foods you were eating? E.g. they can test for 200+ most common
| foods, which you would of had to have eaten within the last 2-3
| months for the Igg markers to still be present - otherwise they
| breakdown and obviously won't be detected.
|
| To note, you need to eat high fat meat in order to properly
| digest the meat.
|
| It's possible to also be allergic to certain types of meat,
| e.g. there's a protein in duck that bothers me.
|
| Another factor to seriously consider is if consuming high
| quality organic meat vs. whatever else.
|
| Also, meat requires a lot of energy to break down due to its
| [nutrient-calorie] density - of course you get back much more
| energy than it consumes, but it is an intensive process, so if
| there are other foods you're eating that are causing irritation
| then digesting meat could be problematic - and so then while of
| course reducing or stopping eating meat will then stop
| symptoms, it's possible that if removing the other foods that
| may be causing problems would then allow the meat consumption
| without causing any problems.
|
| There's really been no properly done research on diet.
| spdustin wrote:
| HLA-B27 is directly related to a number of autoimmune disorders,
| including lupus. I hope this research can expand to other
| conditions associated with HLA-B27, like psoriasis, psoriatic
| arthritis, ankylosing spondylitis, etc.
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