[mrblah]

More anecdotes, I was diagnosed with debilitating pulmonary sarcoidosis several years back and after 8 months of steroids and pain killers wrecking my stomach I found some research on the 'immuno-modulating' effects of some broad spectrum antibiotics, with minocycline in particular being successfully used as therapy. I printed out some pubmed articles and convinced my pulmonologist that it was a relatively low risk thing to try because I was hating the standard by-the-book therapy. Within a few days I was feeling better and after a couple weeks started waning down, so just about a month total to remission. I've only had the feeling of flare-ups returning a few times since after drinking or being stressed out.

I have no doubt antibiotic therapy helped me. There are so many biological pathways with everyone being different so for at least some people, bacterial problems upstream could be the initial conditions that put your system into chaos downstream.

A lot of autoimmune diseases are just fancy words for 'unexplained inflammation' and doctors (who are trying their best), use a differential diagnostic funnel based on what's likely and what's worked as treatment for others. But if the standard treatments aren't working for you, do your own research and ask your doctor to try something else.

[Benjamin_Dobell]

I've also got Sarcoidosis, some pulmonary involvement, but certainly not debilitating (as long as I remain on medication anyway). However, every time I get prescribed antibiotics for something unrelated, damn I feel so much better for a few weeks after taking them!

A few months back I had an infection that required fairly high dose antibiotics and my Sarcoidosis has been noticeably better since, despite a significant increase in other things that usually cause flare-ups e.g. stress and lack of sleep. I am still on Hydroxychloroquine, but in the past I required Methotrexate (which was horrid).

There's been a heap of studies regarding Mycobacterium and Sarcoidosis. Doesn't seem to be the cause for everyone. As another poster pointed out — Sarcoidosis, Rheumatoid Arthritis; these are basically catch all names for conditions of unknown cause that exhibit similar symptoms. That said I'm pretty optimistic about all this research into bacterial involvement.

[mrblah]

My completely naive and unqualified opinion on why antibiotic therapy worked in my case is that some percentage of sarcoidosis and possibly other autoimmune disease like RA is caused by 'internal acne' of some tissues causing runaway inflammation. Minocycline is mostly used to treat skin/face acne but has fallen out of favor because of side effects. IIRC this is because it penetrates deeper into tissues and can cross the blood/brain barrier.

[mrblah]

I'm putting this info here in case it helps anyone. I am not a doctor and not giving medical advice, just sharing my personal story.

I haven't thought about this stuff in over 10 years, but there seems to be a lot of evidence now supporting this theory of bacterial acnes causing runaway inflammation. I can't believe that steroids plus pain killers are still the standard treatment for autoimmune diseases without any investigation into root causes. https://pubmed.ncbi.nlm.nih.gov/14620162/

Furthermore, there is evidence in discs https://pubmed.ncbi.nlm.nih.gov/28369127/ a common flare-up point for people with RA

[dghughes]

My Dad had IPF (scarring of lung tissue) which I believe can develop from pulmonary sarcoidosis. For my Dad it was frustrating to know what to do or who to ask about it. He was on Esbriet to slow the progression of IPF and it did work he got 10 more years instead of 3 years. But before he passed I had read metformin and low-dose nintedanib could reduce or reverse lung scarring. I'm not saying you'll get IPF from what I can read about it pulmonary sarcoidosis can reverse. But metformin/nintedanib info is good to be aware of. My Dad's doctor wouldn't even consider it.

I was debating whether to even write this comment. Like Dad it was a constant search for something new or some hope of a new drug next year. He had rheumatoid arthritis too it developed about the same time so maybe the bacteria and IPF were all connected.

[chiefalchemist]

> But if the standard treatments aren't working for you, do your own research and ask your doctor to try something else.

Sad. But true. That said, why don't the insurance companies know about successful alternatives? After paying out X, isn't it in their best interest - and the patients' best interest - to say, "Our data shows that these alternatives have been successful is similar cases. Perhaps there are somethings here to consider."

It's not a diagnosis, just data / possibilities. This might also encourage insurance companies to be less tight fisted about what they'll cover. That is, they're not blindly paying for fringe "experiment" but investing in solutions that will mitigate future payouts.

Smarter use of the data would means more choices and better care for patients, and more profits for insurance companies. Is that not a win win?

[mrblah]

In a way, the entire differential diagnosis process and treatment planning is already based on data. Your doctor and insurance companies don't think you're special. Autoimmune problems are so varied, everything from testing to biopsy to diagnosis to treatment is based on a slow moving and incomplete body of knowledge and doctors are generally conservative when it comes to straying from the pack. It's why published research is so important for doctors to keep up with. Luckily these antibiotics are cheap so insurance didn't even come into the equation for me.

[chiefalchemist]

Yes. But as treatment goes on and there is a lack of change / progress why wouldn't the insurance companies look for ways to save? They have the data. There are millions of patients and doctors, etc.

[mrblah]

1000% agree. I shudder to think what I would have done at the time if the non-standard treatment cost tens of thousands of dollars out of pocket because insurance wouldn't cover it. Through insurance coverages we're kinda locked into the meaty part of the curve when it comes to treatment options, unless you have money or your doctor really makes a good argument why something should be covered that goes against what insurance will cover for your condition.

[th0ma5]

Any links to these articles?

[mrblah]

It was over 10 years ago, iirc there were more case studies on skin vs pulmonary, but a quick search found this one https://pubmed.ncbi.nlm.nih.gov/18458989/ another search term would be the broader class of antibiotics tetracyclines

[th0ma5]

Thank you!