pr40 Posted November 12, 2013 Report Share Posted November 12, 2013 I read all presentations from the recent PANDAS conference. It seems that new theory of PANDAS has BBB barrier at its center. Then, I found the following about BBB in MS from Wikipedia "It has sometimes been suggested that, rather than being a disease of the immune system, MS is a disease of the blood–brain barrier.[25] A recent study suggests that the weakening of the blood–brain barrier is a result of a disturbance in the endothelial cells on the inside of the blood vessel, due to which the production of the protein P-glycoprotein is not working well.[citation needed] There are currently active investigations into treatments for a compromised blood–brain barrier. It is believed that oxidative stress plays an important role into the breakdown of the barrier. Anti-oxidants such as lipoic acid may be able to stabilize a weakening blood–brain barrier.[26]" My question is if you tried lipoic acid. effects? Link to comment Share on other sites More sharing options...
qannie47 Posted November 12, 2013 Report Share Posted November 12, 2013 I just love this forum... Link to comment Share on other sites More sharing options...
T_Anna Posted November 12, 2013 Report Share Posted November 12, 2013 Just looked it up on Wikipedia. Looks promising, anyone try it? T.Anna Link to comment Share on other sites More sharing options...
LNN Posted November 12, 2013 Report Share Posted November 12, 2013 We used it for the first 6 mos of lyme treatment (which was 2 yrs after we learned about Pandas). It didn't do much for DS, but I realize that he was in a bad place then. So it's possible that if you started it before a flare, you could possibly limit/reduce/prevent a flare. But it wasn't helpful for us in stopping a flare. ALA is a glutathione precursor, so it should in theory help with detox/oxidative stress. It did not help us with tics, which for my son, is a sign he's note detoxing well. But again, when you start using it may make a difference. Two potential negatives to be aware of - ALA falls into the same category as NAC - a high sulfur that, according to the heartfixer document http://www.heartfixer.com/AMRI-Nutrigenomics.htm should be avoided by those with CBS mutations. Second, ALA has an affinity for mercury and is used as a mercury chelator. Andy Cutler, the mercury guru, warns his followers to make sure they chelate with DMSA for many months prior to starting ALA. He says this because ALA crosses the BBB and DMSA does not. So if you remember your science class about osmosis, you;ll also remember that things will move from a heavily concentrated area into a lightly concentrated area. Cutler says make sure that the body side of the barrier is chelated and made into that lightly concentrated area before you start using ALA. otherwise, ALA will bind to mercury and move it from the body (if it's the heavily concentrated area) and into the brain (if that has less mercury poisoning than the body area). instead of the other way around. In other words, if you're battling mercury poisoning and start ALA before you chelate it out of sick body, you'll inadvertently move it into the brain instead of out of the body. I know of no research to support this one way or the other. Cutler is extremely opinionated and feels he's absolutely right on this, but I can't say one way or the other. I just raise it as something to look into so you're aware of the cons as well as the pros of using ALA. Finally, when ordering, realize that there are two ALAs - Alpha Lipoic Acid and Alpha Lineoic Acid. So just double check you're reading about and ordering the ALA you meant to order. Yasko's videos talk about the BBB and I think I recall her talking about ways to strengthen the BBB but it's been almost 2 yrs since I watched the video and will have to see if I can find out what she liked. It wasn't ALA but I want to say it was related to phosphatidylcholine. Maybe someone who's more current in their Yasko studies can chime in. My one take away when I studied all this was that if there were an easy way to tighten the BBB, we'd all be doing it and Pandas would be a non-issue. There are things that DANs and LLMDs like to use that may help in theory or around the edges. And they may be worth trying. Sometimes people find a home run supplement that works miracles for them but not for others. (zinc was this thing for my DS but didn't pan out for others). As long as you don't have a CBS or known mercury issue, i think it's worth trying. You never know where your own miracle may be. But maybe buy a small bottle the first time around momofadult 1 Link to comment Share on other sites More sharing options...
nicklemama Posted November 12, 2013 Report Share Posted November 12, 2013 We've been using alpha lipoic acid for nearly two years now. Dr Agalliu's BBB research paper will be out really soon. Link to comment Share on other sites More sharing options...
NancyD Posted November 12, 2013 Report Share Posted November 12, 2013 The ONLY time I found ALA to be noticeably helpful for DD was when it followed DMSA several years ago. We tried it alone this past year but I did not notice it was helpful at all and when DD came back CBS positive and it tested negative in ART I decided to drop it. Link to comment Share on other sites More sharing options...
sf_mom Posted November 12, 2013 Report Share Posted November 12, 2013 ALA 'apparently' does not cross the BBB in doses under 200 m.g. We did SpectraCell Vitamin/Mineral testing to determine our DS deficiencies and its was recommended he take 100 m.g. of ALA per day. We have been doing chelation and one of my son's remaining symptoms is regular headaches. I imagine the headaches are caused by the metals/bugs moving out of his brain. Link to comment Share on other sites More sharing options...
qannie47 Posted November 12, 2013 Report Share Posted November 12, 2013 I like the idea of Lipoic acid. I asked our chiro who is also a nutritionist and practices holistic approaches as well. He was versed on it and thinks it is very plausible idea. He also found a write up in an immunology journal that promotes it as a BBB healer. The whole mercury thing freaks me out, but wouldn't I know if he has mercury issues? I will have to Google that....thank God for Google. Link to comment Share on other sites More sharing options...
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