juliegee Posted January 28, 2011 Report Share Posted January 28, 2011 Ok, for any long-timers, I know, I know... We've been down this route before- ad nauseum. But I'm trying again NOTHING has ever helped my symptoms more than turmeric. I don't know WHY. there are oodles and oodles of articles about it- some saying that it's almost as effective as daily steroid therapy without the side effects. I gave it a shot about a year ago with amazing results. I took turmeric supplements from GNC. I felt fabulous. My cognitive fog cleared and my energy levels became close to normal. I felt like I could walk on water I was so happy Then, I began to have weird symptoms. My shoulders started to burn- as in the worst sunburn imaginable. Then, my left eye began pulsating and quivering non-stop. I finally realized I was having a reaction to the turmeric and stopped taking it. My symptoms stopped almost as soon as I stopped the supplements. I was so depressed.My new doc is talking about having me try lots of "out there" treatments, like IVIG therapy, anti-TNF, plaquenil, viagra & daily steroid therapy. I am very nervous about each of them for different reasons & am awaiting a pulmonary and cardiac work-up before even considering anything new. But, in the meantime, I decided to go back to what I know works- turmeric. Instead of supplements (I could have been reacting to a filler) I am taking the REAL thing. I have found I can tolerate it well in carrot juice. I bet tomato would work equally as well. Studies say that it's more effective when taken with pepper, so I'm putting 1/2 tsp of turmeric in a coffee mug, liberally sprinkling it with pepper, and stirring it up. It's actually pretty tasty. I'm trying it twice a day.I'm on day 2 and I feel noticeably better. One of my biggest symptoms is a lack of energy. I am incredibly fatigued by 3-4PM. It's all I can do to stay awake. Well, I've had a very busy day today, and I'm thinking about running or doing pilates at 4:30PM???? Unheard of for me I have all of my fingers and toes crossed that I can tolerate it this time... If you haven't tried it before, give it a shot. GOOD STUFF.Julie Quote Link to comment Share on other sites More sharing options...
cmruls Posted January 28, 2011 Report Share Posted January 28, 2011 Thats great.I use powdered tumeric from the korean store 1 lb for $5. Every day I use 1/2 teaspoon in coffee with 2 splenda packs and 1/2 carton of atkins choc. shake. That cup is not too bad, I then follow it with a cup of coffee with splenda and the other 1/2 of atkins shake. Quote Link to comment Share on other sites More sharing options...
dianne.fraser Posted January 29, 2011 Report Share Posted January 29, 2011 I bought some turmeric today - I'll give it a try. I'm actually at my most well at present following five weeks of scheduled rest, but I'm back to work on Tuesday next week and I'll happily try anything that might help prevent a downhill slide before my next scheduled rest in July.I'll let you know how I go.With best wishesDianne Quote Link to comment Share on other sites More sharing options...
corina Posted January 29, 2011 Report Share Posted January 29, 2011 thanks for bringing it up again julie! as lots of us (me included) have bad memory i had forgotten this. i'll look into it and may give it a try!corina Quote Link to comment Share on other sites More sharing options...
heathmcev Posted January 29, 2011 Report Share Posted January 29, 2011 I haven't tried tumeric yet - although I just might after reading this! One warning tho. I just saw my POTS neuro (Dr Khurana) this week and asked him about it -- he said that too much tumeric can cause hallucinations... so maybe low & slow is the way to go? Quote Link to comment Share on other sites More sharing options...
Noreen Posted January 29, 2011 Report Share Posted January 29, 2011 Julie-Wonderful news that it is helping. Keep us informed as to how it is working past week two.I was on Enbrel (1st anti-TNF med) for 7 years. It is incredible for fatigue and really stopped bone damage from RA. However, I don't think it should be taken for just anything and tend to believe it is over prescribed. I took it from the time it was approved until I ended up with vision problems and head pain. Plaquenil has been around for a very long time and would be a good choice for you. I take it for RA, possible SLE, and suspected APS - it works for and is prescribed for all those conditions. It takes several months to get full benefit in your system and you have to have visual field tests done. It generally is a very safe drug Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted January 31, 2011 Report Share Posted January 31, 2011 I picked up 500mg caps, and have been taking one a day for the past week. Haven't noticed any difference yet. What quantities are others taking? I think I'll bump up to two a day this week. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 31, 2011 Report Share Posted January 31, 2011 Y'all keep us posted! Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted January 31, 2011 Report Share Posted January 31, 2011 Hey MM-What exactly is the thought behine the Turmeric? Just curious! KC Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 1, 2011 Author Report Share Posted February 1, 2011 Hey MM-What exactly is the thought behine the Turmeric? Just curious! KCHey KC-I hate to quote an article- there are so many out there. Just google medicinal uses for turmeric. I think the blood thinning & anti-inflammatory properties are what makes this therapy so effective. I first learned about it via a mast cell disorder forum that I participate in. EVERYONE there was using it. iIthink it also increases the availability of nitric oxide- the basis for so much of our suffering. When I first began using it, I noticed a decrease in fatigue & cognitive fog. In countries where it is liberally used- India, for instance- there is virtually NO Alzheimer's. The NIH is currently running several medical studies to document it's efficacy.Try it & tell me if you see a difference Julie Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 1, 2011 Report Share Posted February 1, 2011 Here's the article I posted a link to earlier:http://www.huffingtonpost.com/andrew-weil-md/turmeric-health-have-a-happy-new-year_b_798328.htmlI'm not noticing any differences personally--I have been drinking the tea every day--maybe not much of a dose. HOWEVER, recently my family all got sick with a cold. When I came down with it, it was much milder and shorter duration. Turmeric? Not sure, but I wonder. My husband is now putting it in his food regularly. He thinks it is easing a joint issue he has had in his foot for awhile (he's an avid runner). Who knows, but it has been used medicinally for relief of inflammation and other ailments for thousands? of years... Quote Link to comment Share on other sites More sharing options...
Crow Posted February 1, 2011 Report Share Posted February 1, 2011 I tried the capsules for Ehlers danlos pain, memory etc & I didn't notice any difference. Hope it works for you all though. Quote Link to comment Share on other sites More sharing options...
nmorgen Posted February 1, 2011 Report Share Posted February 1, 2011 I've never tried tumeric before other than in curry, but it's worth trying. Would 1/2 tsp be the right dose? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 25, 2011 Report Share Posted February 25, 2011 Tumeric is a potent nitric oxide scavenger so if you had angiotensin II catabolism problems it would potentially make that worse. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted February 25, 2011 Report Share Posted February 25, 2011 Well.....well.....nice to see you back rama, and this could lead me closer to whats going on. I took the turmeric (with black pepper) for 3 weeks. I felt way worse, it's taken more than a week to get back to my old crappy self.... This seems to be just like everything, what helps half of us, makes the other half worse. Hope others find some relief from this. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted February 25, 2011 Report Share Posted February 25, 2011 I hate to sound dumb, but what are angiotensin II catabolism problems? Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 25, 2011 Author Report Share Posted February 25, 2011 Tumeric is a potent nitric oxide scavenger so if you had angiotensin II catabolism problems it would potentially make that worse.Thanks for that info, Rama. Wonder how it's good for anyone then? OR, are we the only population that has trouble with NO availability? I think folks with mast cell disorders also benefit from this. They, apparently, also experience a worsening of symptoms with angiotensin II...I have an observation to share. The 1st time I took turmeric, I noticed HUGE improvements in cognitive function, energy level, and even pain relief. The 2nd time I tried it- I didn't have the positive effect. This time, however, I was on Plavix due to recent suspected microembolisms in my fingers and toes. I wonder if the blood thinning properties of turmeric are what provided the benefit for me??? Once I realized it had that effect on blood, I stopped taking it- at least as long as I'm on Plavix. My docs think I can switch back to baby aspirin when it gets warmer.Now, I wonder if I should take it at all???Julie Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted February 25, 2011 Report Share Posted February 25, 2011 I hate to sound dumb, but what are angiotensin II catabolism problems? Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 25, 2011 Author Report Share Posted February 25, 2011 I hate to sound dumb, but what are angiotensin II catabolism problems?See the "Latest Vandy Research" topic. There is a form of POTS called "low flow" coined by Dr. Julian Stewart. Apparently some of us in that category have blood vessels that overly constrict- causing the hyperadrenergic form of POTS. This subgroup also has high levels of angiotensin II. Vandy is researching to see whether or not that group can benefit from a med called lorsartan- which inhibits the angiotensin II. Interestingly, high levels of angiotensin II have been implicated as causing mast cell degranulation as well. What's even more exciting for me is that lorsartan has also proven helpful for treatment of Raynaud's... My magic bullet & I'll probably be allergic to it The Angiotensin II catabolism- One of your genes (a tiny part of your DNA) leads to the formation of a molecule called renin. Renin breaks down another molecule, called angiotensinogen, into angiotension I. Angiotensin I is converted into angiotensin II by ACE, angiotensin-converting enzyme. When ACE is allowed free rein, it sometimes produces too much angiotensin II. Excess angiotensin II constricts blood vessels, which raises blood pressure. But that's not all that excess angiotensin II does.Among many other bad effects, excess angiotensin II also leads to abnormal thickening of both the heart muscle and blood vessel walls. It increases output of adrenaline and similar substances, increases the output of another blood pressure raising hormone called aldosterone, and increases salt retention by the kidneys. Fascinating research. Should be helpful for a select few- hopefully us Julie Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted February 26, 2011 Report Share Posted February 26, 2011 Thank you so much Julie. The minute I start to think I am understanding this a bit, I just get more confused again. Quote Link to comment Share on other sites More sharing options...
issie Posted February 26, 2011 Report Share Posted February 26, 2011 Tumeric is a potent nitric oxide scavenger so if you had angiotensin II catabolism problems it would potentially make that worse.I looked up Turmeric and Rama is right it does somewhat neutralize NO - but too much NO causes inflammation. So, we don't want our levels of NO to be too high. So, I think that depends on whether or not you have inflammation. Turmeric is one of THE best things for inflammation and it does help thin the blood and new studies are out showing it is helping Alzheimer's and Parkinson's. So don't write it off completely. I have hyper POTS and I HAVE to use Turmeric or my pain is unbearable. I laid off of it for a few weeks to see if it made a difference and it does. My NO levels were tested at normal. Quote Link to comment Share on other sites More sharing options...
Noreen Posted February 26, 2011 Report Share Posted February 26, 2011 I have hyper POTS and I HAVE to use Turmeric or my pain is unbearable. I laid off of it for a few weeks to see if it made a difference and it does. My NO levels were tested at normal.How do you take turmeric, Issie? dosage, brand, etc. Quote Link to comment Share on other sites More sharing options...
issie Posted February 26, 2011 Report Share Posted February 26, 2011 I have hyper POTS and I HAVE to use Turmeric or my pain is unbearable. I laid off of it for a few weeks to see if it made a difference and it does. My NO levels were tested at normal.How do you take turmeric, Issie? dosage, brand, etc.I go to the health food store and buy the organice tumeric in the spice isle. I sometimes just put a tip of a spoon amount into water with powdered ginger and a little lemon and honey and make a tea. Or, I have a capsule filler and make my own capsules and take one to two a day. It doesn't take allot for me. Some people need more. There are some pretty good receipes on line for ginger tea and I just add the tumeric. Sometimes, clove is added to the tea also and that has some healing properties too. It is used alot in Eastern medicine. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted February 26, 2011 Report Share Posted February 26, 2011 One other quick point on the turmeric, either take it with, or be sure your supplement has black pepper added. It's need to help absorbsion............which for us could be a whole other post Quote Link to comment Share on other sites More sharing options...
ItsMe Posted February 28, 2011 Report Share Posted February 28, 2011 You might want to stay away from Splenda and other chemical sweeteners. They might be detrimental to POTS! I've had much luck with Stevia since it's natural but Aspartame, Splendad/sucralose, saccharin, etc. are nothing but chemicals! Quote Link to comment Share on other sites More sharing options...
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