Reiji's recent activity
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Comment on A blood test for long Covid is possible, a study suggests in ~health
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Comment on <deleted topic> in ~health
Reiji Link ParentGreat! Personally I don't think you need to mind so much about it. On reddit, /r/AskDocs is specifically for medical advice adjacent conversation, for example. I wouldn't worry at all.Great!
Personally I don't think you need to mind so much about it. On reddit, /r/AskDocs is specifically for medical advice adjacent conversation, for example. I wouldn't worry at all.
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Comment on <deleted topic> in ~health
Reiji Link ParentIt's very likely your doc will not know about BPC 157 and also say it's not standard of care. Very last resort option and you'd have to go to a speciality doc who even knows about it I think. The...It's very likely your doc will not know about BPC 157 and also say it's not standard of care. Very last resort option and you'd have to go to a speciality doc who even knows about it I think.
The main thing for you is to get seen by a physio IMO and make progress on regular standard of care stuff IMO. I don't think this is medical advice rather than how to progress your situation in the medical system.
Good luck!
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Comment on <deleted topic> in ~health
Reiji LinkAs other commenters have said, you really need to see a physiotherapist and get imaging (if another doctor recommends it). This is the medically correct way to approach this problem. I don't...As other commenters have said, you really need to see a physiotherapist and get imaging (if another doctor recommends it). This is the medically correct way to approach this problem.
I don't recommend you do this, but BPC-157 (research chemical) is very good at healing tendon issues. There are cases of doctors using it, I believe. If regular treatments don't work for you, you could consider discussing using it with a doctor. Note that this would be a last resort option.
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Comment on I want to use a desk, but I can't get myself to stop using my bed due to a complex tangle of issues (autism, chronic pain, etc.). What should I do? in ~health
Reiji LinkI'm curious if you have ever been evaluated for POTS (e.g. hyperadrenergic POTS) or other dysautonomic diseases. Some of the symptoms you describe are POTS-like (of course not all, but it's...I'm curious if you have ever been evaluated for POTS (e.g. hyperadrenergic POTS) or other dysautonomic diseases. Some of the symptoms you describe are POTS-like (of course not all, but it's possible POTS-like diseases could be a component). For example, the following symptoms are very POTS / dysautonomia-like:
- Ice cold feet
- Propensity to prefer lying down to sitting
- Propensity to sit curled up (reduces effects of POTS since your heart is lower)
- Awareness of heartbeat + high heart rate
- Very physical feeling of anxiety
- Good response to beta blockers
- Temperature sensitivity
You can do a first pass check for POTS by looking at your heart rate in lying down vs in a standing position. If it seems possible, may be worthwhile looking into properly.
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Comment on Fatigue can shatter a person: Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience in ~health
Reiji Link ParentI am very aware of this, having had issues with those kinds of things too.I am very aware of this, having had issues with those kinds of things too.
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Comment on Thinning hair suggestions? in ~life.style
Reiji Link ParentSomeone please let me know if this kind of comment is against the tildes rules: You can check out my comment here https://tildes.net/~life.style/1942/thinning_hair_suggestions#comment-a279 which...Someone please let me know if this kind of comment is against the tildes rules:
You can check out my comment here https://tildes.net/~life.style/1942/thinning_hair_suggestions#comment-a279 which goes through some more non-mainstream recommendations with an emphasis on avoiding side effects.
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Comment on Thinning hair suggestions? in ~life.style
Reiji LinkThe existing suggestions of finasteride, minoxidil, ketoconazole and micro-needling are good. Ketaconazole shampoo is a good idea. Micro-needling is painful and time consuming, in my experience....The existing suggestions of finasteride, minoxidil, ketoconazole and micro-needling are good. Ketaconazole shampoo is a good idea. Micro-needling is painful and time consuming, in my experience. Minoxidil causes shedding and doesn't address the root cause of androgenic alopecia (assuming that's what you have, it's good to check). If you stop minoxidil you will very quickly lose a lot of hair, too. Also, you can get systemic side effects from minoxidil, like heart palpitations, since it's a blood pressure medication.
Finasteride can cause side effects, and the general idea of systemically modifying your hormones is IMO not super good. That said, side effects are rare. There is a conceivable theoretical mechanism for post-finasteride syndrome, and I think it's probably a real thing (even ignoring entirely psychogenic causes), but still it's very rare. So, those 4 should cover the majority of people's use cases.
That said, if you want to avoid side effects as much as possible, you can look into the topical anti-androgen fluridil (also called topilutamide, brand name eucapil). This has a clinical trial and is used in eastern Europe, unlike the other research drugs for topical anti androgens. It also is inactivated by water, so there's very little risk of systemic absorption (study found no active substance or metabolites after 90 days of usage, IIRC). It is weaker, but for me it's sufficient.
There's also 17α-estradiol which is used already to stop hair loss in both males and females. It's weak and should not cause side effects. If you get systemic absorption, that may even be a bit of a bonus since 17α-estradiol was shown by the ITP to extend lifespan in genetically heterogenous male mice.
Disclaimer that this isn't medical advice, and this strategy is not the generally accepted strategy of fin+minox+ketoconazole so you should check with your doctor etc before you try it.
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Comment on Fatigue can shatter a person: Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience in ~health
Reiji Link ParentYeah it makes sense hey. I could see long covid being different to ME/CFS for a few months post infection but if it continues for long enough my guess is that the full ME/CFS disease state starts....Yeah it makes sense hey. I could see long covid being different to ME/CFS for a few months post infection but if it continues for long enough my guess is that the full ME/CFS disease state starts.
I was enjoying my ME/CFS given viral resistance for years until I cured it then I promptly caught covid.
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Comment on Fatigue can shatter a person: Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience in ~health
Reiji Link ParentME/CFS and long covid are likely the same "disease" in the sense that long covid etiologies should be a subset of ME/CFS etiologies, IMO.ME/CFS and long covid are likely the same "disease" in the sense that long covid etiologies should be a subset of ME/CFS etiologies, IMO.
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Comment on Fatigue can shatter a person: Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience in ~health
Reiji Link ParentLikely ME/CFS has many etiologies. ME/CFS is hard to solve overall but for a single person with enough determination I believe you can make progress. Because the etiologies are varied it's hard to...Likely ME/CFS has many etiologies. ME/CFS is hard to solve overall but for a single person with enough determination I believe you can make progress. Because the etiologies are varied it's hard to recommend anything specific.
What I did was do a series of experiments using the results of the previous ones to work out which ones to do next. Some of the experiments I did were like low dose naltrexone, tonsillectomy, quercetin, rapamycin, etc (none of these worked for me, these are not recommendations or disrecommendations).
I'm quite convinced ME/CFS is solvable, we just need to find the right lever(s) to tweak.
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Comment on Fatigue can shatter a person: Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience in ~health
Reiji LinkI had(have?) ME/CFS for 3~4 years after getting a series of bacterial infections and it's absolutely horrible. I was never bedridden but I did get terrible post extertional malaise and couldn't...I had(have?) ME/CFS for 3~4 years after getting a series of bacterial infections and it's absolutely horrible. I was never bedridden but I did get terrible post extertional malaise and couldn't walk for more than 15 minutes without a 2 hour rest afterwards.
Fortunately after a long series of N=1 experiments to build up a better understanding of the properties of my illness and using pre-clinical research I was able to almost completely cure it, but it took a lot of time and energy.
The issue with looking into various blood markers for long covid (ME/CFS, really) is that, with a complex immunometabolomic syndrome like long covid, there's so many interacting systems that have derangements. Even if you find some biomarker for it (of which this is not the first, for example, complement C4a is quite correlated with ME/CFS), it doesn't mean that the system that biomarker relates to is the root cause of the issues. It may be downstream of the root cause or part of a cycle of positive feedback.
It would be very nice to have a cheap and clinically validated test for long covid / ME/CFS though, for sure.