ramakentesh Posted May 11, 2011 Report Posted May 11, 2011 Serum nitric oxide found low in POTS patients - including male subjects:http://en.cnki.com.cn/Article_en/CJFDTOTAL-YXXX200908062.htm Quote
toddm1960 Posted May 11, 2011 Report Posted May 11, 2011 Just the way I reacted to turmeric leads me to believe I have very low NO levels. Guess it's worth getting checked. Quote
Victoria Posted May 11, 2011 Report Posted May 11, 2011 Good find. Has anyone tried L arginine? Quote
Lenna Posted May 11, 2011 Report Posted May 11, 2011 Just the way I reacted to turmeric leads me to believe I have very low NO levels. Guess it's worth getting checked.Hi toddm1960. Please explain how you reacted to turmeric. What happened to make you believe that you have low levels of NO?Has anyone tried L arginine?My son, who has low NO levels, takes Niteworks every night. It has a combined 5 grams of L-Arginine, L-Citrullin. I don't really think it does anything for him. Quote
toddm1960 Posted May 11, 2011 Report Posted May 11, 2011 Turmeric is a NO scavenger, my symptoms increased and I felt awful the whole two weeks I taking it. Within a week after stopping I was back to my normal crappy self Quote
Sarah4444 Posted May 11, 2011 Report Posted May 11, 2011 rama, Is there anything we can do besides exercise to increase our NO levels? Quote
Lenna Posted May 11, 2011 Report Posted May 11, 2011 My son also takes Losartan to increase his NO levels. Since he started on this med last winter, he sometimes he seems a lot better -- and sometimes he doesn't. It has not been a miracle cure. Quote
sue1234 Posted May 11, 2011 Report Posted May 11, 2011 I have hyperadrenergic POTS, but have acquired the flushing all day every day. I am trying to wrap my head around it. But, I think it has changed my usual POTS into a weird mixture of hyper and hypo tension. It's like, at any given minute, I won't know how my body is reacting. Or, maybe I should call it a cross-reaction.So, my point is, maybe I should try the turmeric to lower the NO, and maybe I won't flush. Which makes me wonder what the biochemical or biological activity is of tumeric. I see someone is taking l-arginine and l-citrulline. I have read before those are by-products of bacterial decarboxylation upon proteins. I hate to bring up my bacteria theory here, but maybe it's possible that some of us have too much of the kinds that produce l-arginine vs. some of us not having enough. Quote
green Posted May 11, 2011 Report Posted May 11, 2011 Someone posted a few weeks ago an interview with a Dr. Ignarro, who says that you can significantly boost your nitric oxide levels by taking a combination of amino acids arginine and citrulline along with antioxidants vitamin E and vitamin C. Quote
Lenna Posted May 11, 2011 Report Posted May 11, 2011 Niteworks,, that I mentioned above, is Dr. Ignarro's product that he sells through Herbalife. It has all the vitamins and supplements combined in a powder that he recommends for raising NO levels. Quote
juliegee Posted May 11, 2011 Report Posted May 11, 2011 I have to say that I'm pretty lost on this I think I have low flow POTS just because of my severe vasoconstriction- although I haven't had my serum angiotensin II levels checked. (Lenna, has Danny?) BUT, I am also DXed with MCAD which apparently causes patients to have very HIGH levels of NO. Could each condition be working against the other to normalize my levels? Could this be what's happening with you too, Sue??? Turmeric helped me tremendously the first time I took it. It did nothing the second time Hmmm. Quote
Lenna Posted May 11, 2011 Report Posted May 11, 2011 Hi Julie,We thought that Danny was having his Ang II tested, but his pediatrician accidentally ordered the wrong test. By the time the test results came back and we realized the error, Danny had already started the Losartan and it was too late to test. His neuro, btw, refused to order the test, saying that he would put Dan on Losartan regardless. But I wanted to know, that's why we asked the pediatrician to order it.I did look at the MCAD website you referred me to, Julie. I don't know if ever thanked you for that. The symptoms don't really fit Danny, so I think we can rule it out for him. Quote
sue1234 Posted May 12, 2011 Report Posted May 12, 2011 Well, that might explain why I feel like, even though I have POTS, I also feel the vasodilating flush. I have excessive folate(don't remember, but like 5x higher than the top range) every time it is measured. And, I do not take any supplements. Folate is produced by intestinal bacteria. Quote
Sarah4444 Posted May 13, 2011 Report Posted May 13, 2011 Thanks for this info, rama. I am interested that folate might be involved with NO. When I was planning to get pregnant I took large amounts of folic acid (I have spina bifida) and felt better than usual I think.Lots of research does seem to be going on now in this area, and I am glad about this - gives me hope in case my kids end up with difficulties. Quote
Sarah4444 Posted May 13, 2011 Report Posted May 13, 2011 Thanks, green. Has anyone tried this?(Sorry Lenna, I now realize you answered this. I have been away and was working my way through the posts in reverse chronological order. Duh.) Quote
juliegee Posted May 16, 2011 Report Posted May 16, 2011 I've been trying to wrap my head around this with limited success I don't think it's as easy as simply raising a low level of NO. Even Rama said that the same author who published this study published another proving the exact opposite- indicating that children with POTS have a high level of NO: http://www.ncbi.nlm.nih.gov/pubmed/20643249 Clearly, a lot more research needs to be done to try to unravel this. That being said, nitric oxide dysfunction or dysregulation DOES seem to be related to autonomic dysfunction. Lots of research implicates a connection. Figuring out how to properly regulate NO seems to be key for many of us. I've been researching NO and trying to figure out exactly HOW it's connected to both autonomic dysfunction and MCAD- as I have both. Many mast cell researchers say that POTS/NMH are simply symptoms of overly reactive mast cells. I met a cyberfriend a few years ago who was doing research on this with Dr. Martin Pall at Washington State University. He's come up with a theory: NO/ONOO (Nitric Oxide/Peroxynitrite- pronounced "No, Oh No!") that he claims explains the mechanism and etiology of MANY diseases. The ones he addresses are: CFS/ME (synonomous with autonomic dysfunction), Multiple Chemical Sensitivity (synonomous with MCAD), Fibromyalgia, and PTSD/Gulf War Syndrome. Indeed, CFS and FM are commonly associated with autonomic dysfunction and many ANS researchers (including Dr. Peter Rowe at Hopkins) have a special interest in the Gulf War Syndrome. http://www.pandoranet.info/documents/MARTIN_PALL_FEATURE_ARTICLE_0707_NEWSLETTER.pdfHere's his site: http://www.thetenthparadigm.org/ I can't say that I've wrapped my head totally around it, but what I do LOVE is the fact that he has various therapeutic approaches listed. One is even aimed at calming down overly reactive mast cells . I know some of us have talked about trying to manipulate our NO levels with L-citrulline, L-arginine, Taurine, or Turmeric. But, it's obviously a lot more complicated than that. This guy seems to get at the heart of what we've been poking around AND he gathers lots of other research already done in this arena. Fascinating. Quote
Sarah4444 Posted May 16, 2011 Report Posted May 16, 2011 Thanks for posting this, Julie - it does look complicated but I am going to try to absorb some of it. It sure has a good name (No!...Oh No!...) Quote
issie Posted May 16, 2011 Report Posted May 16, 2011 My guess is there are two possiblities - if you are PD Type POTS with mostly OI intolerance than there could be high NO. If you're Hyper Type POTS - high bp than there could be low NO.There's also another possiblity - just a thought - could it be possible that some have increased their NO levels to such a point that the body no longer produces it correctly? Like for example - I've had a doctor tell me before that due to stress you could for years over produce cortisol - to the point where your body slows down production and then you become low corisol. It starts out as too much and then reverses and won't produce enough.Then there could be times of exreme difference. One of the articles Julie listed said that NO could be okay in some parts of the body and in other parts not okay. Could the dysfunction in the veins (either constriction or laxity) be causing the issue? Could this explain why sometimes there seems to be blood pooling (laxity) and other times vasoconstriction? Still allot of unanswered questions.And it's interesting that the doctor recommends Taurine as one of the helps for this particular pathway problem. Since Taurine is thought to increase NO. If there is too much NO - why does he suggest increasing it with Taurine? Think that's a contridiction - he did suggest that some of the things that might increase NO could possibly help with the dysfunction of this pathway however. Quote
sue1234 Posted May 16, 2011 Report Posted May 16, 2011 Julie,Your message box is full, and I have an article from Issie to forward you regarding NO. Quote
juliegee Posted May 18, 2011 Report Posted May 18, 2011 My eyes are crossing from all of the reading I don't think it's as simple as your theory, Issie, but who knows? The more I read, the more I realize that NO synthesis is pretty complex. Keep in mind that Hyper POTS is the one associated with MCAD. Elevated levels of NO are implicated in asthma & allergy inflammation and in preventing mast cell death (isn't that the definition of mastocytosis???) That being said, some of the latest research points to a NO playing a very protective role in histamine release... There seems to be evidence for both sides. Pall's therapy is aimed at down regulating (slowing) NO synthesis. I tried to do some research to find out how effective his treatments have been. Not too much there -a few testimonials & devotees. Pheonix Rising discusses all of the therapies that Pall suggests. Maybe peruse that site if you are considering trying any of them. NO obviously plays a key role in autonomic dysfunction and other disorders, but it is so unstable that it is almost impossible to measure accurately and effectively in real life. Until we know what it's doing when, manipulating the levels seems iffy at best & risky at worst We need MORE research!!!Sorry about my full mailbox, Sue. I will clean it up for you Quote
issie Posted May 18, 2011 Report Posted May 18, 2011 Julie,Don't know what you recently read, but if you go back and look on the Canada Mystosis site - the info that is on that thread seems to indicate that NO actually modulates mast cells and would be beneficial. Don't know if you've found something different. I'm trying Taurine - so far - not liking the results. Will try less and see if I'm just over sensitive. IssieSue,Thanks for getting the info to Julie - I should have just posted it on the site - you can if you like then everyone can read it. Had a moment tonight and looked up my e-mail.Will be busy - out of town - father has cancer and is about to undergo surgery - hoping for good results - he's very sick and has allot of problems. Quote
sue1234 Posted May 18, 2011 Report Posted May 18, 2011 As per Issie's request, I am posting an article she forwarded to me to forward to Julie: (So Julie, don't need to clean out your box ) http://george-eby-research.com/html/taurine.htmlHope everything goes well with your dad, Issie. Quote
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