144 Comments
User's avatar
SojournerOnSojourn's avatar

Pharma is a poison that may have a beneficial side effect.

Expand full comment
Verity Kellan's avatar

I have long been fascinated by the idea of "autoantibodies" as fixed molecules.

My understanding is that the tests for specific antibodies actually detect nothing more than "whether there is something that will bind to a particular human antigen in vitro."

If the binding occurs, "Antibody X" is pronounced positive, and the degree of binding may be quantified.

But what if "Antibody X" would ALSO bind to a non-self-antigen, if tested? What if it's there because the body was originaly trying to "attack" something else? This is the idea behind molecular mimicry, yes, but I think it's under-theorized and its implications are under-explained. The point is that although the reaction occurs, there is no ONE thing that the term "Antibody X" is describing. If my antibodies were compared to another T1D patient's, they may be molecularly different. They may attach to their "target" cells in different ways because of these structural differences. They may have been triggered initially by a different exposure under different circumstances, leading to a different level and type of harm. The test is positive for a reaction, rather than for a discrete and universally identical entity.

Expand full comment
Amye C's avatar

I am still searching for a "fix" for my body attacking my own vascular endothelium (small vessel vasculitis) 45 years on.

Here I sit with another "flare". The worst part is the symptoms similar to CHF.

Other "autoimmune" troubles have resolved in the past (asthma, endometriosis, etc) but this most debilitating of all of them just keeps coming back. I now have permanent cognitive issues and CFS symptoms.

I have no clue what triggers it.

Only local and organic unprocessed food, raw local dairy. Some fermented and raw supplements. I don't eat out. Have only red light in the house after sundown, high dose melatonin and 7-10 hours of sleep. Walk two to four times a day. Minimalist electronics (just a cheap smartphone, no wifi). Filtered well water and the Milky Way out here in rural Florida.

Vasculitis is one of those topics I almost never see discussed.

Expand full comment
Remnant MD's avatar

Sorry to hear that, Amye.

Vasculitis is a complex spectrum of disease.

What have you found gives you the most relief from the flare, or the longest time between flares?

Expand full comment
ViaVeritasVita's avatar

Don't really know where to place this--but several people were interested in my get-off-Levothyroxine story, so want to offer this news. Monday I had a tele appointmentt with a thyroid specialist (M.D.) to discuss the results of the blood test which I had mailed into Paloma Health (the on-line thyroid practice which I had discovered in Feb. '24) The results of the test were available to me a week ago today: all five were in the "normal" range. Monday's appointment, therefore, was a bit of pro forma (but a delight)--at which she dismissed me as a patient. We had a long very pleasant chat about my "life-style"[hate that phrase]; that possibly back at time of Hashimoto diagnosis, I was short on zinc or selenium.

Expand full comment
Sean Pyritz's avatar

your argument is very anecdotal - "I hear stories like this all the time..." As a reader who hasn't heard stories of people with "autoimmune" disorders curing themselves with lifestyle changes. I'm also not sure how the label of "autoimmune" is inconsistent with your point that we don't know why the organ is damaged. You aren't offering an alternative here for why someone develops an "autoimmune" condition just that we shouldn't call it that because by doing so we are playing into "industry" hands of perpetual medicine and return customers. There's a lot of heavy lifting being done by this idea that "industry" is not interested in curing disease, which may be true, but really isn't relevant to the efforts by medical professionals to discover why people suffer these conditions.

Expand full comment
Remnant MD's avatar

Not knowing why something happened is captured by the term idiopathic.

Autoimmune has a more clear causal inference, and it is in many cases incorrect.

You can look at this at population level data or with individual cases. Individual cases are always anecdotal, but it doesn't mean they are invalid.

From population level, you can see that many "autoimmune" diseases, which is supposed to be inherent physiologic confusion, relate very closely to latitude & sun exposure as one example.

Further, the article also exposes the fundamentally broken assumption of using autoantibodies and inflammation as an indicator of autoimmunity.

These are some of the reasons why the label "autoimmune" is inconsistent with the natural history of most cases of autoimmunity.

If you still like the term, idea, and mainstream approach to unsuccessfully treating (and worsening rates of) autoimmune disease...then feel free to continue utilizing it.

I am very clearly offering an alternative of why people develop autoimmune diseases. In the vast majority of cases it is obviously environmental. The critical point is that many people will ignore elements of the environment which are toxic, out of ignorance or incompetence or diagnostic inertia.

Whether you (or any person) likes or agrees with my argument is as meaningless to me as it would be to anyone trying to synthesize a new interpretation of known data.

Expand full comment
Sean Pyritz's avatar

refuting the idea that autoantibodies as the definitive test of autoimmune seems like a good argument but you are only offering your interpretation of diagnosis with little charity to an opposing view - strong argument but could be a straw man. Also you aren't offering an alternative. You say it's "environemental" which seems awfully similar in broadness to the "autoimmune" label. The study you link to about gestational diabetes points to the autoantibodies being a strong indicator for T1D development! Glossed over that in your summary to attempt to point to your point of view (again not charitable to opposing view)

Expand full comment
ViaVeritasVita's avatar

Update on my Dec. 6, '24 comment regarding weaning self off levothyroxine, from Dec. 29, 2023 to Dec. 20, 2024. This morning I had the telemedicine appointment with thyroid specialist at Paloma Health. My blood test results had come back last week: all normal. Specialist, M.D. with interest in nutritiion (reason why I chose that doctor) said no follow-up needed. So, citizen science, N=1, worked out.

Expand full comment
Remnant MD's avatar

Wonderful to hear.

What do you think was most effective for you?

Expand full comment
ViaVeritasVita's avatar

I’m not quite sure what you are asking—would be happy to respond if you can clarify (and I have two other nice tidbits to offer you following from your sunburn post last summer/early fall).

Expand full comment
Remnant MD's avatar

What do you believe was most effective in helping you come off of the levo without compromising thyroid function?

Expand full comment
ViaVeritasVita's avatar

I apologize for delaying my response to you. Rate of change, would be my answer. Once I had decided to take courage in hand, and to actually do this, at the end of December, ‘23, I sat down with calculator and very sharp knife. Figured out how to arrange 90% of a week’s total, and cut tablets to that amount, such that I was getting, daily, 90% of the original 137 mcg. Did that for a full two months, during which I discovered Paloma Health (the on-line practice of thyroid specialists). Which discovery made me realize that a) after taking their little quiz, I had none of the symptoms of thyroid disease, and b) I didn’t have to wait 9 weeks. So I cut the time to 8 weeks, then later, in June, to 6 weeks—dropping another 10% each time. By fall I thought to make 5% changes every 3 weeks. Through it all I paid very close attention to my “state of being”. About 30 years ago, I had wondered “Do I really need this stuff?” and went cold turkey, in July. Bad idea. Very bad idea. But I knew no better. By Christmas there were yellow bags beneath my eyes; I rose as usual at 6:30, got breakfast and lunches for children, kissed them good-bye, and by 8:30 I was on my bed, having to spend the whole day there. Didn’t then know about “slow and steady” when tapering off a drug. So I had an idea of what to expect if my experiment were going the wrong way. However, I only observed positive changes. I am now, today, 11 weeks and two days from my 75th birthday, and I confess to having energy and strength that I haven’t had since about 30-35 years ago (oddly enough, that pretty much corresponds with the time of being prescribed levothyroxine….). In the last 3 months, almost daily, I’ve been hauling logs , innoculating logs (I’m setting up my own little mushroom farm), hauling cartloads of woodchips, broadforking nearly 5000 square feet of ground.

And while I’m here, talking to you, I wanted to offer another tidbit. You wrote last summer about sunscreen, and how you used to burn badly. The complete essay was pay-walled—and wanting to read it is what turned me into a paid subscriber. My husband, in his teens and twenties, was so fair that he had white skin with very red cheeks (a source of embarrassment to him at the time). And he burned terribly easily, terribly badly—on one beach day, his toes were so burned that he couldn’t put on his sneakers. I, suffered much less—but my shoulders were always subject to sunburn. We both grew up with margarine as the only fat. In our first 15 married years, we went through a pound of margarine per week—two sticks for the weekly cookies, some in my bread, the rest on bread/toast. At sometime, probably in the late 90’s, the price of butter had dropped to an affordable level; and I never went back to margarine. And my husband no longer gets sunburn, although he does wear a hat when mowing, because there’s no natural cover on his head any longer! We both don’t use sunscreen at all; I’m outdoors a lot, and I don’t burn. All our food is prepared by me; most of our plant food comes from my garden. My bread contains, with rare exceptions, only 4 ingredients. My cooking fats, in order of use frequency, are EVOO, butter, beef fat, lard, with a rare use of coconut oil.

Expand full comment
Kristina Renee's avatar

Lovely!

Expand full comment
StillerNP's avatar

Thank you. So refreshing to hear your story, since I also cured my UC in my 20s with lifestyle and dietary modifications. Have been told for years by the medical community that was impossible to cure and I still must have UC, but it is in ‘remission’. But, there is no evidence of ‘dis-ease’, so I never listened to them. Now it has been 30 years without re-occurrence.

Expand full comment
Rafael Olivé Leite's avatar

Critical care doctor here. Docs will only abandon a paradigm when a better paradigm is offered and proven in their terms. Even so, it might take a generation because, as Kuhn postulated, paradigm changes are more about succession than about personal convincing.

I think the non-allopathic doctors should work harder on establishing consistent, convincing disease models. I see lot of cure claims, in which I trust, but some laziness when it comes to biological plausibility. They usually take the easier (and profitable) path of playing the “anti-system” hero.

I am an enthusiastic advocate for selective lifestyle changes to heal or maintain health. Preventive medicine has nothing to do with taking medications and lab tests.

However, if you come to ICU with a life-threatening flare of an autoimmune disease I will give a large methylprednisolone dose.

God luck in your quest.

If you interest in biological plausibility please visit

https://thethoughtfulintensivist.substack.com

Expand full comment
Remnant MD's avatar

There is nothing more biological implausible than a conserved evolutionary tendency of sporadically attacking your own organs.

Expand full comment
Holly's avatar

Thank you for sharing. Following.

Expand full comment
Mrs Jackson's avatar

This article was an answer to prayers. My 8 year old has routine monitoring because of a rare gene mutation that predisposes her to pediatric cancers (supposedly; correlation not meaning causation in my mind). She just had thyroid autoantibodies on her most recent labs and has had stuff in her thyroid they’ve been watching. The scans indicated that the artifacts that had previously been “questionable” have gone to “unremarkable” and I was told by the oncologist that the endocrinologist said just to monitor if she’s healthy with no symptoms. I was personally wondering if you could get autoantibodies if the “questionable” within the thyroid was being destroyed… this is the first scan of probably 5 or 6 that has been “unremarkable” and the only time she’s had the autoantibodies.

Expand full comment
Remnant MD's avatar

If the body was dealing with something in the thyroid, I see no reason why antibodies against thyroid tissue would be suspicious. It is expected, and normal.

Expand full comment
Cancer Outside the Box's avatar

When I had Lyme disease they tried to tell me that I had autoimmune disease. I was positive in some centromere configuration, and they thought I had sjogren's polymyositis or who knows what. Anyway once I got rid of the lyme the so-called antibodies went away too.

Expand full comment
Tim Connolly's avatar

Awesome article. “He cannot see beyond the labels. “. Gawd save me from doctors and their labels. One lazily labeled me with MADSAM an autoimmune condition which I knew was wrong so spent a year with another doctor so he could label my peripheral neuropathy hereditary. Oh ok you named it. Here is the participation trophy. Now what do I do about fixing this. Doctor doctor anyone. Crickets.

I’m doing my own work with diet exercise meditation and yoga therapy thanks to my wife.

Expand full comment
VerumSerum's avatar

Someone close to me has debilitating RA and I’m firmly convinced “autoimmune disease” is wrong…let alone the role of thymic selection…we ignore the “autoimmune” lymphocyte origin story…

I prefer the label “immune-mediated inflammatory disease” as this doesn’t implicate adaptive immune “auto antigens” per se but points to an immune problem. We are so quick to throw anti-TGF or anti-IL-6 at it without really being sure of what’s happening. And there is total ignorance of the fact that X reactivation has something to do with it…it’s mostly a female disease and maybe with the exception of lupus young female African and Latina Americans it is in older females.

I’ve been particularly concerned that blocking IL-6 could also prevent muscle recovery as this is the key “myokine” to allow normal inflammatory process to repair and regenerate muscle. We have been quite short sighted. Also what about the levels of “autoantibodies”. IF autoantibodies are causal, then potential opsonization you would think would drive specific phagocytic clearance of autoantigens. In so many ways we do not understand the fundamentals of the disease and constant advocacy for just measuring outcomes with biologics in hand. Single cell genomics could play a role here.

Great article…the docs seem brainwashed and I think MD PhDs who think outside the box with research could really help rheumatology…San Diego has some great clinician scientists that think differently. Also with all the drugs rheumatology doesn’t talk to cardiology as many patients start to suffer from cardiovascular issues over the course of treatments.

It’s a miserable cycle.

Expand full comment
Luc Kenbach's avatar

How did you cure your ulcerative colitis?

Can you explain the large increase in infant eczema, food allergies, and autism? What do you think is responsible for the increase? Which researchers have published evidence of the best cures/treatments I.e. lifestyle or environmental changes for above?

Expand full comment
Remnant MD's avatar

All of those are related to one another, and likely related to environment-induced inflammatory stress. There are certainly common factors (some covered in this article), and some that are context-specific.

There's an article for the UC cure.

Expand full comment
Picket Fence's avatar

I was diagnosed with pemphigus vulgaris 24 years ago. It is a blistering disease which destroys the skin, and it has been around for hundreds of years. Before steroids it was 90% fatal.I had a rare case of it and ended up hospitalized for receiving large doses of prednisone administered by IV. The damage to my body was tremendous, but a large percentage of it was eventually reversed. Seven years later I was in full remission and have remained so ever since.

How could I possibly "self heal" this disease?

Expand full comment
Luc Kenbach's avatar

Are you saying you healed with steroids? How did you go into remission?

Expand full comment
Picket Fence's avatar

The steroids stopped the attack on my skin and halted the progression of the disease. With that in check my skin strengthened and healed on its own properly. I then went on a years long journey of tapering down the steroids and taking other meds as 'steroids sparing' drugs. I had a small flare-up of the disease 2 years later, upped the steroids again, and then continued the tapering and other meds. I also started 5 years of IViG treatments (intravenous immunoglobulun), which is now the go-to treatment for pemphigus and other autoimmune diseases. All told it was 7 years until full remission. The disease was triggered by me taking an ACE inhibitor for borderline high blood pressure. Needless to say I stayed as far from "the jab" as I could.

Expand full comment
Remnant MD's avatar

I must admit have had little interest in dermatological issues, but am always trying to expand my understanding.

Expand full comment
Silent scorn's avatar

This is very interesting-@remnant Md., if you’re still following comments, what are your thoughts on late onset type 1 diabetes? My husband was diagnosed at 60. He’s healthy and fit. “Autoimmune diseases “ such as celiac, lupus, Addison’s run strong in his family. He’s so miserable I want to help but can’t. I’m suspicious it was a result of covid ( illness, not shots as he didn’t get them). Would love to hear from you.

Expand full comment
Remnant MD's avatar

Hard to tell without a thorough history, but as the article suggests I would be highly suspicious of anyone that tells you "your body is attacking an organ for no reason." I trust the majesty of human physiology more than anyone who would tell me that.

Expand full comment