JoeJack101 Posted September 12, 2011 Report Share Posted September 12, 2011 unknown Quote Link to comment Share on other sites More sharing options...
WyomingGal Posted September 12, 2011 Report Share Posted September 12, 2011 I don't think anything can cure it, but maybe help to alleviate some fatigue. It took awhile to build up to a full dose, but Enzymatic Therapy's Energy Revitalization System (make sure the B-complex is in it) has helped a lot. Also Co-Q10 and Corvalen (D-Ribose) have helped me, too. Make sure you don't take a bunch of supplements at once. You should start with one and wait a couple of weeks to see if your body likes it or not. If you start a ton of supplements at once, then you won't know which one you may be having a reaction to (such as a headache, nausea, etc). Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 13, 2011 Report Share Posted September 13, 2011 I found that increasing fluid and salt improved my fatigue to some degree. This is not a "supplement" but this is something most POTS patients are recommended to do. Quote Link to comment Share on other sites More sharing options...
lieze Posted September 13, 2011 Report Share Posted September 13, 2011 I am probably one of the most conservative or in that group since I am so afraid of all pills.I just drink water and rest.I am often surprised at how awful I can feel and how within hours I can be right back up and at it again.It's mind boggling.When I feel bad it's almost like the sign to go get water and drink. Who knows it may not do anything but be an OCD fix for me. Something to do to pass the time until that bad feeling goes away. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted September 14, 2011 Report Share Posted September 14, 2011 There are some excellent supplements that can help. I agree, CoQ10 and D-Ribose. I also take Liposomal Glutathione. I have been tested for Thyroid and neurotransmitters. I needed Thyroid and Cortisol. My cortisol is low from 1-4 pm. Quote Link to comment Share on other sites More sharing options...
abnel Posted September 14, 2011 Report Share Posted September 14, 2011 Sallyblooms, do you know the name of the neurotransmitters test you had done and where the testing took place? Was it a blood draw or urine test or a home test? I am still thinking of taking L-Carnetine but wondered if I should have a neurotransmitters test done first. Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted September 14, 2011 Report Share Posted September 14, 2011 Lotusflower, I'm not sure where Sallyblooms had her tests done, but Neuroscience is a lab that does neurotransmitter testing. Check out their website - they offer so many really cool tests, mostly neuroendocrine. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted September 14, 2011 Report Share Posted September 14, 2011 Yes Neuroscience it good. I also have blood tests. My doctor had the test mailed to me. Saliva. I take Carniclear liquid. VERY GOOD!!!It works great to find deficiencies and use supplements to make us strong and help symtoms. Finding a good integrative doctor is key. We all need to contact our senators and congressmen as I talked about in my post. We will surely miss our supplements if FDA and pharmaceuticals take them to make money. The act is in the committee right now. Quote Link to comment Share on other sites More sharing options...
abnel Posted September 14, 2011 Report Share Posted September 14, 2011 Thanks Tablet and Sallyblooms for the info. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted September 15, 2011 Report Share Posted September 15, 2011 Also, if you need it after testing, cortisol and thyroid help. I tested low for Cortisol between 1-4pm so I take a small amount at noon. Has been great.I take Thyroid also. Lots of things to address with supplements. Quote Link to comment Share on other sites More sharing options...
bensman Posted September 15, 2011 Report Share Posted September 15, 2011 I have been tested through Neuroscience twice. The information I gained was valuable and it was covered by my insurance.They will recommend supplements (expensive) to you based on the results that are Neuroscience supplements. Be sure to research the ingredients of each one before you decide to purchase/take them. Let me know if you want more details.Kate Quote Link to comment Share on other sites More sharing options...
abnel Posted September 15, 2011 Report Share Posted September 15, 2011 Hi Kate, I'd love to find out more, including their website. Is this their website? http://www.integrativepsychiatry.net/index.html I am not in the US, however some basic information about who they are and what they do might help me find where to look in my own country. Thanks everyone, glad this test has helped you all. Quote Link to comment Share on other sites More sharing options...
bensman Posted September 15, 2011 Report Share Posted September 15, 2011 (edited) I will write more later Edited September 17, 2011 by corina Quote Link to comment Share on other sites More sharing options...
bensman Posted September 15, 2011 Report Share Posted September 15, 2011 I looked at my results and I am SO glad you all brought this up. I hadn't looked at them since being diagnosed with POTS and investigating mast cells, so now I am looking at them from a new perspective. My histamine was above normal.....very important in my mast cell journey. And my norepinephrine was almost above normal.I did both urine and saliva tests. These are the ones I can remember right now: DHEA, cortisol 4x a day, GABA, serotonin, dopamine, epinephrine, norepinephrine, histamine, creatine, and now I am drawing a blank. They offer a ton of different tests.My integrative doctor gave me the kit and ordered it all. She uses the company frequently so knows what she's doing.Once again, I just want to reiterate to use caution with their supplements. I am not saying don't use them, but do your research first.Joe ~ Sorry we took over your thread!Kate Quote Link to comment Share on other sites More sharing options...
gertie Posted September 15, 2011 Report Share Posted September 15, 2011 I must be another odd one because any supplement I've ever taken makes me feel more tired. I came close to being comatose taking COQ10 & vitD before I figured out they were the cause & I wasn't taking them at the same time. The only thing that helps me is to rest for as long as it takes to get my strength back. Quote Link to comment Share on other sites More sharing options...
corina Posted September 17, 2011 Report Share Posted September 17, 2011 dear members, i really would like to warn you for sites that aren't "safe". I've edited the website volley9 mentioned, as Internet Explorer blocked part of the site because of security certificate errors. That doesn't happen on reputable sites. also there has been a (second) warning from FDA to the owner of the site. i do hope you'll all understand that we edit because we care about your safety and ask you to be careful putting up links here as well.thanks for understanding,corina Quote Link to comment Share on other sites More sharing options...
bensman Posted September 17, 2011 Report Share Posted September 17, 2011 Corina,I totally understand your concern. Can you tell me (or PM me) why the FDA has issued warnings for this site? I am very interested to know because my integrative doctor uses them frequently and if the test results aren't valid for some reason, I would really like to know. Any details or a link to the info would be appreciated. I am surprised that my insurance would pay for testing from a facility that is under scrutiny from the FDA.Thanks,KateEdit : I found the warnings from the FDA. It looks like the most recent was from 2006 and is for the labels on their supplements. I would agree with this, which is why I warned people to use caution with their supplements. If you found something about the actual testing being bogus, please let me know! It would be very important to me. Thank you! Quote Link to comment Share on other sites More sharing options...
corina Posted September 17, 2011 Report Share Posted September 17, 2011 i know you warned kate, you were very clear in asking people to use caution, which is highly appreciated. so don't worry, i know your intentions are very good!take care,corina Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted September 17, 2011 Report Share Posted September 17, 2011 We have to learn about supplements for sure before taking. I have two integrative MD's so I love learning all about it and trust what I take. I research constantly, books galore, ha. FDA is not helping us with the meds. they seem to LOVE, so I take them with a grain of salt. They love the pharm. industry and get money that way.We all are different so it is great to learn and then start low. Getting a great integrative MD is wonderful. Mine have so much experience. I trust them much more that my reg. MD. This is not rocket science, ha. It is just good to give our bodies what they need. Quote Link to comment Share on other sites More sharing options...
targs66 Posted September 19, 2011 Report Share Posted September 19, 2011 I'm another one that can't tolerate most supplements. I really wish there was some explanation. Like another poster here, Vitamin D and co-q10 make me feel AWFUL. I've tried just about everything, and tried introducing them in small doses and then very gradually "ramping" up -- but most make me feel very ill. The ones that really should help - B vitamins, vitamin D, co-q10, magnesium, vit. C, ribose, thyroid meds (synthetic, natural, T3 only, etc.) - all are intolerable. I feel like that should be a clue as to our conditions, but so far, no answers.... doctors don't tend to believe me. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted September 20, 2011 Report Share Posted September 20, 2011 Joe-I don't know about reversing fatigue, although there are certainly things that can help. As far as any supplements go, make sure you advise your doctor BEFORE trying any. Supplements and herbals are still drugs, and can cause side effects and interactions with medications you are currently taking. At the very least, talk to your pharmacist. Most of them have had at least some training with supplements and herbals, and can warn you of possible problems. I personally have yet to find anything, from prescribed medications like Adderall, to various vitamins, herbal blends, etc. that has had any real impact on my fatigue. Just a final thought on herbals/supplements. Make sure you purchase from well respected companies that contain standardized amounts of the main, or active ingredients. While I don't know that regulating all supplements and herbals under the guise of the FDA is really a great idea (seeing as how they already make such a mess of prescription drugs!) it should always be remembered that as the supplement industry is completely unregulated, they can claim whatever they want on the bottles, and have no obligation to include in the pills the promised amounts of the medicine. They have no requirement to accurately list all ingredients. There are great companies out there, long-established, that put out wonderful products. But there are also plenty of unscrupulous companies out there that take cruel advantage of people's desperation, and charge outrageous amounts of money for "medicines" that not only don't work as promised, but could potentially hurt you. When in doubt, talk to a competent DO, they can usually recommend companies well known for their efficacy. Sandy Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted September 20, 2011 Report Share Posted September 20, 2011 Yes, finding a wonderful integrative MD that knows what they are doing. Brands of supplements, amounts and blood testing are imporatant. Quote Link to comment Share on other sites More sharing options...
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