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JoeJack101

What Supplements Worked For You?

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I don't know your diagnosis, but if you have POTS or orthostatic hypotension, my doctor recommended Alpha Lipoic Acid. I think there are several people on here that use that, myself included. Licorice root is also recommended by some, but I haven't tried that yet. I tried prescription Florinef and Midodrine, but I didn't tolerate either one well. I'd rather use supplements, anyway. I have POTS/orthostatic intolerance and small fiber neuropathy (constant pain in hands/feet), and my BP gets way too low. The supplements really depend on what health issues you're having.

Cheers,

Jana

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potsgirl....... do you currently take Alpha Lipoic Acid? If so, Can you tell it helps with your symptoms?

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I have really good doctors that know supplements thank goodness. So I do not have to guess on dosages and brands etc. I have a schedule of supplements three times a day. Long list. I get really thorough blood tests twice a year, had saliva testing too. Neurotransmitters, vitamins, the whole nine yards. Hormone testing has been very good too.

CoQ10 has been very good for my heart rate, bp etc. Correcting all hormone imbalance was the first thing. Bio compounded hormones like Tri est, pregenalone, progesterone, 7 Keto DHEA, Thyriod etc.

Supplements for the immune system like Vit E, Liposomal Vit C, Astragalas, AHCC, Proboost Thymic Protein, Maitake D drops, Vit D drops.

Supplements to help the adrenal glands like Adrecor.

The methyl vits like B12, SAMe, etc.

D-Ribose powder two times a day has been SUPER good for energy. ATP under the tongue and Liposomal Glutathione is great!

Carnetine and Co Q10 have taken my brain fog away completely.

5HTP raised the Seratonin level so I could sleep and feel good again. It goes down like other things with stress and illness.

:) Alpha Lipoic Supreme is healing my nervous system and helping the nerves in my feet. Has been great!

Two great things for CFS and POTS for me are Liposomal Glutathione and ATP.

I add protein powder and First Greens to my smoothie each day. They are full of things that are good also.

I take fish oil also.

Antioxidents are SOOOO important, like the above Vit. C and E and A good multi, but the MAIN things to help I think, since I had already been on many things for a year, then my doctor added Liposomal Glutathione by Livon Labs, and ATP.

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How much Carnitine and Co Q10 are you taking.....if you dont mind me asking? I am on those supplements but not sure of the correct amount to take daily?

Who advises you on which supplements to take and the dosage? All of my hormone levels have been normal.

thanks

Liz

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I take approx 120 mg of CoQ10, powder and also oil. I use liquid Carniclear, one teaspoon per day. Not sure what that is if you take pills.

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Hi Sally,

Even though are lists are very similiar reading your's makes my head spin ... ;) I'm not being judgemental here just saying how our protocals are so similar. Ever feel like your life is a protocal ? I do ... :)

I have a good doctor too but I really need to ask her to come up with a list to follow. I leave the office with notes but heck if I know where they go ..

So far I've discovered that digestive enzymes and probiotics are necessary. And if I can't sleep a combo of melatonin, theanine and 5HTP work for me.

I tested low on pregnenolone and DHEA so I take these. My thyroid and adrenals are only off a little so I opted not to mess with these yet.

as far as energy goes, I'm still working on it. Giving up caffeine has helped my enery levels stabilize tho. I started taking DLPA, DMAE, and Carnitine last week and can't tell yet if these are going to help.

I've taken the DLPA and Carnitine before but never noticed any improvement ...

The DMAE is to help increase brain activity and so far so good. I read not to take DMAE if you have a seizure disorder but that was AFTER I tried it. So far it hasn't caused any seizures or made me feel seizure like aka jittery from head to toe ...

tc ... d

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Even though are lists are very similiar reading your's makes my head spin ... ;) I'm not being judgemental here just saying how our protocals are so similar. Ever feel like your life is a protocal ? I do ... :)

Hi, I don't feel like my life is my protocal. I HAVE a life because of my supplements. I am SO happy to have doctors that test and know supplements and how to help me. I would be throwing up almost daily with migraines if it were not for Dr. Dzugan's twice yearly testing for hormones etc. I would not be able to sleep either. That is just the beginning of how I have been helped.

So, it is a lot of trouble, three times a day to sit and take my pills, gels, powders and packets but I wouldn't trade it for the world!!!! :D Sally

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Hi Sally,

I don't think I made it clear that I was kidding about your life being a protocal. ;) My friends and I say "our lives are protocals" all the time. We just mean that once upon a time we didn't have to think about supplements, diet, doctors, etc etc ...

I have a life now too because of the what I've done but it's certainly not the carefree life I had prior to getting sick. And it's definitely not the life of anyone who's healthy ...

Good to hear that you're doing so well ... tc ... d

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:D I understand really!!! I know you were joking. True, we all have our regime if we are lucky. So many have not found help. I haven't been carefree or normal in many years. I had CFS for 20 years, ha. I am so used to it, just part of me. The supplements have really done a great job for that, now to get better and better from the POTS. ;)

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I have to say that I've tried just about everything (Co-Q10, ribose, iron, licorice, antioxidents, vit. D, magnesium, B12 [injections and pills], evening primrose oil, flaxseeds and flaxseed oil, glutathione, and so on) and nothing has given me any improvement. (I went on Dr. Myhill's protocol two years ago and, while I think she's a great doctor and has helped many patients, I felt utterly awful and had to stop after a few months.) I often have very negative reactions to things that should make me feel better. I've tried taking them in very small amounts and ramping up the dose, I've tried taking each one on its own so that I'm not confused by my reactions to them, and have had very little luck. At best, I'm just glad when I can take something that doesn't make me feel worse. I sometimes think I have a hyper-immune response to meds, vitamins, herbs, etc., and that's why they make me feel bad. I've spent so much money on these things, and time and again have been disappointed.

I'm not posting this to be negative! I'm NOT saying that supplements are worthless; obviously, they help a lot of people and that's fantastic. Just that they don't work for everyone, and if so, you're not alone. I'm just posting this because I think that the benefit of this forum is that everyone's experiences are represented.

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misstraci,

I've just started the ALA for my small fiber neuropathy, and I'm not sure if it's helping yet or not. I've also begun taking Gabapentin (Neurontin) along with a very small dose of oxycodone (only in the morning, when my pain is the worst), and that seems to be helping the most. I couldn't tolerate Lyrica or Oxycontin (yes, these are prescription meds, but they are helping me.)

Hope you find some supplements that work for you. I'm about to start taking CoQ10, D-Ribose, and 5HTP along with the Alpha Lipoic Acid soon, to see how those help. I guess we really just have to experiment with our individual health issues to see what works for us.

Good luck!

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