ramakentesh Posted February 8, 2012 Report Share Posted February 8, 2012 I am curious about alpha-lipoic acid and Acetyl L-cartinine. Often reputed to be beneficial for neuropathy but consistently getting positive reports about their benefit in patients that do not have obvious neuropathic features.Got an email from a guy I havent spoken to in ages who claims that his POTS/CFS has been basically cured by these two supplements and high dose Thiamine. Im a reknowned sceptic but this guy seems pretty credible.So may I ask:have you tried either or both of these supplements?What specifically do you think they helped?Did they effect presyncope? dizziness? brain fog?Do you have neuropathic POTS or perhaps an unknown variety? Quote Link to comment Share on other sites More sharing options...
Rachel Posted February 8, 2012 Report Share Posted February 8, 2012 I have been taking both Alpha-Lipoic Acid and Acetyl L-Carnitine for close to a year now I think. They have both been helpful, but by no means even close to a cure for me.They haven't had an effect on presyncope, syncope, or dizziness. They have helped some with brain fog. They don't help as much as Cerefolin NAC, but they have helped.The other thing they have helped with is energy levels. I'm able to do a little bit more when I take them and I don't feel as awful. I still feel awful, just not as awful. I'm still home-bound unless someone can take me out, and I still have to be in bed 18 hours a day. So definitely not a cure for me.Technically I do still have a diagnosis of POTS, but that doesn't really describe me well anymore. Over the years my symptoms have progressed, and my doctors now believe I have a mitochondrial disease. It was for this reason that I was prescribed Alpha-Lipoic Acid and Acetyl L-Carnitine. Quote Link to comment Share on other sites More sharing options...
issie Posted February 8, 2012 Report Share Posted February 8, 2012 One thing about alpha lipoic acid - you must make sure your B1 levels are high enough before you start it (that's thiamine). Some people will take the thiamine first and then add the alpha liopic acid. It has helped many with neuropathy symptoms. The l-carnitine is an energizer and will help with muscle tone and prevents muscle wasting. So, for us that are having issues with mobility - it's a really good idea. There have been studies of them giving it to people in nursing homes and it has prevented muscle wasting even in bed bound people.I just started the additional B1 - will let you know the results.Issie Quote Link to comment Share on other sites More sharing options...
shoegal Posted February 8, 2012 Report Share Posted February 8, 2012 would the script strength carnintine be better? Quote Link to comment Share on other sites More sharing options...
issie Posted February 8, 2012 Report Share Posted February 8, 2012 would the script strength carnintine be better?Not necessary - for us that are super sensitive to things - would be better to start out lower and see how you react. It is an amino acid - which is a part of protein and some have trouble digesting and assimilating proteins. I have a liquid and that can be more easily tweeked.Issie Quote Link to comment Share on other sites More sharing options...
shoegal Posted February 8, 2012 Report Share Posted February 8, 2012 i have some of the liquid script version, what side effects do you have? i've thought of trying it for a while Quote Link to comment Share on other sites More sharing options...
issie Posted February 8, 2012 Report Share Posted February 8, 2012 Everyone is different. Just start out slow because it could cause some bloating issues. Don't take at night because it gives you energy. It could speed up your heart rate a little - but, you won't know how your body reacts until you try it. Let us know how it goes.Issie Quote Link to comment Share on other sites More sharing options...
shoegal Posted February 8, 2012 Report Share Posted February 8, 2012 well miralax already gives me enough bloating and doesn't do anything anyway. speeding my heart doesn't sound fun but energy, well what is that?!?:-) Quote Link to comment Share on other sites More sharing options...
Maiysa Posted February 8, 2012 Report Share Posted February 8, 2012 Hi Ramakentesh,I have also heard good things about Alpha Lipoic Acid. I read in the Mayo Clinic study that these good results are usually in about 300-600 mg of ALA daily. It's been a while, but I thought that was the magic number. I react to everything, so I bought the powdered ALA capsules and I put just a dash a day in my juice and have worked up to about 100 mg.'s a day. It's a peppery taste that's for sure. Yucky, but I'm used to it now and can take it in capsule form. I take it after my blood sugar is stable, usually in the afternoon because I had read that it can mess with hypoglycemia, but I think that is only if it is taken in large doses. But I don't know what large doses means, so I play it safe. Also I have noticed that the numbness in my extremities has gotten better and I'm only taking 100 mgs, but I have been taking it for several months. Not sure if it's a coincidence, but the numbness is definitely not as bad as it used to be. I read that people with neuropathy started seeing results in just a few weeks, so maybe me taking it for a long time in small doses, it can be possible to have a positive result. I hope it can just get better for all of us. Quote Link to comment Share on other sites More sharing options...
issie Posted February 11, 2012 Report Share Posted February 11, 2012 bump up for other discussion on alpha lipoic Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 14, 2012 Report Share Posted March 14, 2012 Ramakentesh,I take carnitor the prescription form of L-Carnitine liquid 30ml (2 tbsp.)=3000mg. It is supposed to be good for TLE and my TLE doctor measured my free carnitine which was low. I have taken it daily for some time and can not really tell that it does anything. It has no side effects for me. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted March 14, 2012 Report Share Posted March 14, 2012 Ive purchased a neuropathy support formula but havent really started taking it properly yet. Will let you know what happens. It has alpha lipoic acid plus b vits i think. Quote Link to comment Share on other sites More sharing options...
roxie Posted March 14, 2012 Report Share Posted March 14, 2012 I'm glad to read this. My dr wants me to try carnitine for energy soon, I'm really hope it helps Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 23, 2012 Author Report Share Posted March 23, 2012 Im reading some really positive results from this stuff with POTS and CFS. And not necessarily because of neuropathy. They have many effects. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.