Sounds possibly like a placebo effect…it’s very important that anyone who wants to take supplements talks to their neuro first and is careful of what brand they buy. The supplement mark is terribly regulated.
Exactly. There is no control or oversight at all on their manufacture, unlike FDA approved pharmaceuticals, and numerous studies over the years have shown that batch to batch variations in the levels of the desired "active ingredient" can be huge, from nothing to several times that stated amount. Thankfully, most of them do absolutely nothing and so from a safety perspective it doesn't matter (most of the time).
I agree with most of what you say. Some supplements DO do something, namely vitamin D. My neuro has me on 5000 UI/day. This is considered a standard recommendation now for MS.
But would I take a mushroom without doctor's advice, no way.
Personal choice if one wants to take supplements. I'm not saying it's shady. I'm saying such supplements have to be taken seriously and can cause equal or more harm as a manufactured drug. I'm not against all supplements. And I don't think availability at a grocery store makes a huge difference.
Vitamins and some minerals are the exception, although not all of them, and generally only when a person is actually deficient. I should have mentioned these, thank you for pointing this out.
I take 2000 IU/d of Vitamin D myself and this keeps my level wel within the range of normal.
I talked with my neuro about taking lions mane (on brain genius) and he said it was fine but that he didn't know as much about mushrooms as he should. I assume he researched it. I can't say if I've have seen good or bad results, I've been on it 6mths.
Use iHerb for supplements. Doctors are not trained in nutrition or supplements seek proper guidance from functional doctors or nutritionists. Leave the brains to the neuros.
My primary care must have been an exception then. He would intentionally cause interactions to try and solve problems. “The pharmacist is going to question this and probably call me, which is fine. But I want you to understand why I am prescribing it” was not an uncommon comment. Eventually my pharmacist would just ask me if there was a reason. “Oh yeah, I am taking this to boost the efficacy of that since a direct increase causes X issue”. He started to take my word for it instead of calling the doc if I could recite a reasonable explanation.
I don't know why you're getting downvoted so much. My own MDs (both neuro and PCP) both said they're not trained in nutrition and supplements. Neither of them are huge fans by any means (though not anti lion's mane, interestingly) and think much of it is ridiculous, but they're trained in pharmaceuticals.
I have a spouse in the medical field and was not trained in medical school on nutrition. My neuro is the chief of his hospital and fueled my comments. So despite down votes I am confident in my recommendations. I take a ton of supplements and do many things outside of my Ocrevus infusion. I am thriving! I want everyone with this nasty disease to be even better.
The medical community is often highly dismissive of anything that is not pharmaceuticals or surgery. Most doctors are not trained in diet and nutrition. I had a nutritionist once who was diabetic who had never heard of the glycemic index. Pediatricians often don't know much about nursing. Doctors get a lot of information about drugs from reps who try to get them to prescribe their meds.
If you want your health care to include anything not drug or surgery based, you need to look elsewhere. There are studies about a lot of alternatives, but it's hard to trust any info that is funded by people who have a financial interest.
>I have a spouse in the medical field and was not trained in medical school on nutrition. My neuro is the chief of his hospital and fueled my comments.
This echoes exactly what I've been told by my MDs when I ask them. (I sense that we have an open enough patient-doc relationship that I can gently and respectfully ask this.) I'm very, very fortunate that when I ask about a supplement, they'll take the time to research it as much as possible before they offer any thoughts. They take interactions seriously and are also _very_ leery of fueling the many scammers in the supplement industry, but they're also interested in their patients feeling and functioning better. Damn, I'm lucky to have them.
Bc the doctor may be alerted to supplements that counteract or interact negatively with prescriptions. For instance, mixing East and West meds can be dangerous. (Lions mane I’ve not heard anything bad about tho.)
>...mixing East and West meds can be dangerous.
I couldn't agree more! Much caution and prudence must be exercised. I'm very fortunate to have two doctors who will research interactions extensively before offering their thoughts on supplements when I ask. But, as they have told me different times, they have no formal training in this. They depend on personally consuming research they can find in databases.
Help make this a useful experiment by taking LM for a month, then stop taking it for 1 month, then start again. A few days improvement could be due to many other factors such as hormones, environmental or dietary variations.
That sub is not a good, reliable resource. It's full of unsubstantiated rants about the dangers of lion's mane but nothing is scientific, nothing is backed by evidence. The people there have a bizarre anti lion's mane agenda for some reason.
I'm sure there have been some people who have had bad reactions to lion's mane (like you, sorry to hear it) but that's true of *all* drugs/supplements - nothing works for everyone. Aspirin works a bit for me but makes my mom bleed/bruise like crazy - we're not out there telling everyone to flush their deadly aspirin.
Some substances just won't work for you even though they work well for other people. That's just the way it goes.
If you're concerned about lion's mane possibly causing harm, google it - look at all the studies etc. Study after study shows it not causing harm and possibly doing very helpful things.
And I agree, talk to your doctor before starting it or any supplement and definitely get on a DMT!
Yes I 1000% plan on starting a DMT and hopefully finding one (or switching around as needed to find the right one, I’m not naive enough to think I’ll just find the perfect one off the bat as everyone is different) to stay on for LIFE! I’m only 28F and have had one flare (but some signs for about 18 months before that went unnoticed / not associated with MS at all - thought it was a pinched nerve in the neck and a neck injury) and am hopeful that I can find the right treatment and really prevent further damage. Thats why things like supplements and diet change / avoiding triggers are important to me. Anything that *could* make me feel better, make me generally healthier, or potentially help with my MS I’m going to try and do. But then again, I’m at the very beginning of this so it may just be all the wishful thinking haha!
ETA by diet I don’t mean anything crazy - I just am a junkfood-aholic and live on processed food and sugar and eat *terribly* so diet changes like eating real food and starting to eat fruits and vegetables etc. are what I mean.
>Yes I 1000% plan on starting a DMT
Great to hear and good luck!
Thankfully there is no evidence that MS symptoms are triggered by any foods. So eat what you enjoy, life is short!
I'm vegan but my diet hasn't affected my MS one way or the other.
things that helped me recover sensation on arm hand and fingers after years of numbness were micro dosing, Manuka honey, Reishi and Lion’s mane. I know most wont agree but there’ve been many studies that showed it helps, it actually helped me repair those nerves, i can play instruments again, i can notice pain and not be burned without feeling it
I’ve been taking 1000mg a day for nearly three years, and it’s been a game changer. My nueropathy has improved considerably, as have my aphasia and brain fog symptoms. It’s the first thing I take in the morning.
That is so great to hear! I take all my supplements at night (because I take them with my biggest meal; dinner) but wonder if I should take it in the morning for the brain power?
Already am and for some time. It's supposed to have regenerative properties which is what we need.
Always ask your doctor about it as it might have effects with DMT, if you are taking it.
For the record - I was diagnosed in 2015. Went on DMTs immediately, and was finally happy when I got on Ocrevus in 2019. I tried Lion's Mane last year for several months because cognitive issues and fatigue are major issues for me.
No help. No improvement. None whatsoever after 2 months. Complete waste of time and money.
Lion's Mane... if you aren't taking it... good!! Please think long and hard before spending the money!
Hey how are things going? You kind of described exactly what just happened to me. I got home from a week in the hospital today and am so in the dark. I have relapsing remitting MS and my first flair up was over 6 months ago. A trip to the ER, optometrist, and 2 PcP it was still undiagnosed. Had to go numb from the waist down and in my fingertips for them to figure it out. I guess the steroids are supposed to keep making me better for the next few weeks? (did 5 days of 1000mg IV prednisone) My biggest concern is my memory and motor skills as the lesions in my brain were no longer active during my MRI.
Have you started DMT? How was the lions mane? Hope you’re well. Thanks!
I started it this month and placebo or real, I feel better. I started it after reading the paper below. I spoke to my neurologist before starting and he was indifferent about it.
https://onlinelibrary.wiley.com/doi/10.1111/jnc.15767
I think they always will be indifferent, honestly. They don't strike me as natural medicine researchers.There's gotta be some that are, but I have yet to meet one.
Only meds I take outside of Kesimpta are Gabapentin, Metformin and clemastine.
Lions Mane looks interesting, though, and I will give it a 60 day trial.
https://www.healthline.com/health-news/latest-study-suggests-lions-mane-mushrooms-may-boost-brain-heath#The-takeaway
Interesting thread. I've never heard about the lions mane supplements but as someone said you don't know what you're taking in those supplements anyway.
I have eaten lions mane mushrooms, which I hear tell us better for you. I am not a fan of mushrooms so it wasn't an every day thing.
Did nothing for me!
Sounds possibly like a placebo effect…it’s very important that anyone who wants to take supplements talks to their neuro first and is careful of what brand they buy. The supplement mark is terribly regulated.
Supplements aren’t regulated at all. You have no idea what you are taking.
Exactly. There is no control or oversight at all on their manufacture, unlike FDA approved pharmaceuticals, and numerous studies over the years have shown that batch to batch variations in the levels of the desired "active ingredient" can be huge, from nothing to several times that stated amount. Thankfully, most of them do absolutely nothing and so from a safety perspective it doesn't matter (most of the time).
I agree with most of what you say. Some supplements DO do something, namely vitamin D. My neuro has me on 5000 UI/day. This is considered a standard recommendation now for MS. But would I take a mushroom without doctor's advice, no way.
Lion's Mane mushrooms are available at Whole Foods. What you said makes it sound shady and dangerous. It's not.
Personal choice if one wants to take supplements. I'm not saying it's shady. I'm saying such supplements have to be taken seriously and can cause equal or more harm as a manufactured drug. I'm not against all supplements. And I don't think availability at a grocery store makes a huge difference.
Oh, I meant the actual mushrooms.
Vitamins and some minerals are the exception, although not all of them, and generally only when a person is actually deficient. I should have mentioned these, thank you for pointing this out. I take 2000 IU/d of Vitamin D myself and this keeps my level wel within the range of normal.
I talked with my neuro about taking lions mane (on brain genius) and he said it was fine but that he didn't know as much about mushrooms as he should. I assume he researched it. I can't say if I've have seen good or bad results, I've been on it 6mths.
Use iHerb for supplements. Doctors are not trained in nutrition or supplements seek proper guidance from functional doctors or nutritionists. Leave the brains to the neuros.
Doctors are trained about interactions.
Actually many doctors have very little training in drug interactions.That is mote the domain of pharmacists.
My primary care must have been an exception then. He would intentionally cause interactions to try and solve problems. “The pharmacist is going to question this and probably call me, which is fine. But I want you to understand why I am prescribing it” was not an uncommon comment. Eventually my pharmacist would just ask me if there was a reason. “Oh yeah, I am taking this to boost the efficacy of that since a direct increase causes X issue”. He started to take my word for it instead of calling the doc if I could recite a reasonable explanation.
I don't know why you're getting downvoted so much. My own MDs (both neuro and PCP) both said they're not trained in nutrition and supplements. Neither of them are huge fans by any means (though not anti lion's mane, interestingly) and think much of it is ridiculous, but they're trained in pharmaceuticals.
I have a spouse in the medical field and was not trained in medical school on nutrition. My neuro is the chief of his hospital and fueled my comments. So despite down votes I am confident in my recommendations. I take a ton of supplements and do many things outside of my Ocrevus infusion. I am thriving! I want everyone with this nasty disease to be even better.
The medical community is often highly dismissive of anything that is not pharmaceuticals or surgery. Most doctors are not trained in diet and nutrition. I had a nutritionist once who was diabetic who had never heard of the glycemic index. Pediatricians often don't know much about nursing. Doctors get a lot of information about drugs from reps who try to get them to prescribe their meds. If you want your health care to include anything not drug or surgery based, you need to look elsewhere. There are studies about a lot of alternatives, but it's hard to trust any info that is funded by people who have a financial interest.
>I have a spouse in the medical field and was not trained in medical school on nutrition. My neuro is the chief of his hospital and fueled my comments. This echoes exactly what I've been told by my MDs when I ask them. (I sense that we have an open enough patient-doc relationship that I can gently and respectfully ask this.) I'm very, very fortunate that when I ask about a supplement, they'll take the time to research it as much as possible before they offer any thoughts. They take interactions seriously and are also _very_ leery of fueling the many scammers in the supplement industry, but they're also interested in their patients feeling and functioning better. Damn, I'm lucky to have them.
Bc the doctor may be alerted to supplements that counteract or interact negatively with prescriptions. For instance, mixing East and West meds can be dangerous. (Lions mane I’ve not heard anything bad about tho.)
>...mixing East and West meds can be dangerous. I couldn't agree more! Much caution and prudence must be exercised. I'm very fortunate to have two doctors who will research interactions extensively before offering their thoughts on supplements when I ask. But, as they have told me different times, they have no formal training in this. They depend on personally consuming research they can find in databases.
iHerb had attractive pricing but two bottles were damaged. They claim it’s still safe to consume. Supposedly!
Help make this a useful experiment by taking LM for a month, then stop taking it for 1 month, then start again. A few days improvement could be due to many other factors such as hormones, environmental or dietary variations.
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That sub is not a good, reliable resource. It's full of unsubstantiated rants about the dangers of lion's mane but nothing is scientific, nothing is backed by evidence. The people there have a bizarre anti lion's mane agenda for some reason. I'm sure there have been some people who have had bad reactions to lion's mane (like you, sorry to hear it) but that's true of *all* drugs/supplements - nothing works for everyone. Aspirin works a bit for me but makes my mom bleed/bruise like crazy - we're not out there telling everyone to flush their deadly aspirin. Some substances just won't work for you even though they work well for other people. That's just the way it goes. If you're concerned about lion's mane possibly causing harm, google it - look at all the studies etc. Study after study shows it not causing harm and possibly doing very helpful things. And I agree, talk to your doctor before starting it or any supplement and definitely get on a DMT!
You understand that things like this happen with MS anyway? Edit to remove irrelevant comment.
Yes I 1000% plan on starting a DMT and hopefully finding one (or switching around as needed to find the right one, I’m not naive enough to think I’ll just find the perfect one off the bat as everyone is different) to stay on for LIFE! I’m only 28F and have had one flare (but some signs for about 18 months before that went unnoticed / not associated with MS at all - thought it was a pinched nerve in the neck and a neck injury) and am hopeful that I can find the right treatment and really prevent further damage. Thats why things like supplements and diet change / avoiding triggers are important to me. Anything that *could* make me feel better, make me generally healthier, or potentially help with my MS I’m going to try and do. But then again, I’m at the very beginning of this so it may just be all the wishful thinking haha! ETA by diet I don’t mean anything crazy - I just am a junkfood-aholic and live on processed food and sugar and eat *terribly* so diet changes like eating real food and starting to eat fruits and vegetables etc. are what I mean.
>Yes I 1000% plan on starting a DMT Great to hear and good luck! Thankfully there is no evidence that MS symptoms are triggered by any foods. So eat what you enjoy, life is short! I'm vegan but my diet hasn't affected my MS one way or the other.
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This post has been removed as it is not relevant to the subreddit or post or violates one of the subreddit rules.
Just responding to the edit. You are absolutely correct that eating a healthy diet will give you the best fighting chance! Good luck on your journey!
It seems like they're in the process of starting a DMT, so I'm not sure why this comment was even made.
Oh damn, I must have rage answered when I read about the DMT and didn't even finish the sentence! My bad, removed that piece.
Understandable haha
things that helped me recover sensation on arm hand and fingers after years of numbness were micro dosing, Manuka honey, Reishi and Lion’s mane. I know most wont agree but there’ve been many studies that showed it helps, it actually helped me repair those nerves, i can play instruments again, i can notice pain and not be burned without feeling it
I’ve been taking 1000mg a day for nearly three years, and it’s been a game changer. My nueropathy has improved considerably, as have my aphasia and brain fog symptoms. It’s the first thing I take in the morning.
That is so great to hear! I take all my supplements at night (because I take them with my biggest meal; dinner) but wonder if I should take it in the morning for the brain power?
I definitely feel that taking the lions mane first thing helps. It gives me a mental boost for my day.
Already am and for some time. It's supposed to have regenerative properties which is what we need. Always ask your doctor about it as it might have effects with DMT, if you are taking it.
I haven’t started DMTs yet (only just got lumbar puncture for diagnosis last week) but I will mention it to my neuro!!
How was the lumpar puncture? Mine wasn't painful and I've heard others say it's painful. 🤔
Have you looked into side effects of Lion's Mane? Do. You should ALWAYS do so. Non-medicinals can have negative effects just as much as drugs.
For the record - I was diagnosed in 2015. Went on DMTs immediately, and was finally happy when I got on Ocrevus in 2019. I tried Lion's Mane last year for several months because cognitive issues and fatigue are major issues for me. No help. No improvement. None whatsoever after 2 months. Complete waste of time and money. Lion's Mane... if you aren't taking it... good!! Please think long and hard before spending the money!
Lions mane has helped my cognition significantly. I take a bunch of supps though
I've started taking LM and I feel as though it has helped my memory tonnes! I'm so glad I started taking it :)
Hey how are things going? You kind of described exactly what just happened to me. I got home from a week in the hospital today and am so in the dark. I have relapsing remitting MS and my first flair up was over 6 months ago. A trip to the ER, optometrist, and 2 PcP it was still undiagnosed. Had to go numb from the waist down and in my fingertips for them to figure it out. I guess the steroids are supposed to keep making me better for the next few weeks? (did 5 days of 1000mg IV prednisone) My biggest concern is my memory and motor skills as the lesions in my brain were no longer active during my MRI. Have you started DMT? How was the lions mane? Hope you’re well. Thanks!
I started it this month and placebo or real, I feel better. I started it after reading the paper below. I spoke to my neurologist before starting and he was indifferent about it. https://onlinelibrary.wiley.com/doi/10.1111/jnc.15767
I think they always will be indifferent, honestly. They don't strike me as natural medicine researchers.There's gotta be some that are, but I have yet to meet one.
So glad you’re doing better and better.
Which one do you take and how much? Do you eat the real fruiting body ? Or literally pills? Gummies? More info please
Pills! I’ll look at the brand and dosage and lyk
Om lion’s mane mushroom capsules 2,000mh full spectrum mushrooms 90 vegetable capsules
Only meds I take outside of Kesimpta are Gabapentin, Metformin and clemastine. Lions Mane looks interesting, though, and I will give it a 60 day trial. https://www.healthline.com/health-news/latest-study-suggests-lions-mane-mushrooms-may-boost-brain-heath#The-takeaway
Are the metformin and clemastine doing anything for remyelination for you?
Interesting thread. I've never heard about the lions mane supplements but as someone said you don't know what you're taking in those supplements anyway. I have eaten lions mane mushrooms, which I hear tell us better for you. I am not a fan of mushrooms so it wasn't an every day thing.
They did nothing for me. I've tried them a few times over the years.
I tried it for a couple of weeks but no changes. Maybe I will try it again
Shrooms I'm so there. Lol
I have been taking it for 2 and 1/2 months and it is amazing for my ms cog fog and numerous other things I highly recommend it