nothing effects me at all

[Aerose91]

I decided to conduct a sort of experiment recently. I (like I'm sure all of us) am on a bunch of supplements but have never felt any noticeable difference from anything, so I decided to taper off everything to see if there's a difference. Here's what I currently take daily.

High dose Phosphatidylcholine
High dose Theracurmin
Bicailin
Valcyte
LDN
Vitamin D
B12
Magnesium
Tyler panplex digestive support
Dr Enlanders electrolyte blend
Dr Enlanders Hepapressin (once/week)
Injectable b complex (once/week)


I tapered off everything correctly and it's been about 1 month now and like I suspected- No difference whatsoever. My brain is still as bad as it was, my tolerance to energy expenditure hasn't changed and my muscle weakness/fatigue levels are the same

When I first got adrenal fatigue a few years ago I saw slight changes depending on what supplements I took- now since ME there is nothing. It makes me think that my health problems are much more deeply rooted than any medicine can touch. In the interest of saving money, I'm staying off everything.

 

[optimist]

How about your diet? Have you tried eliminating different food groups? If I eat stuff that makes me sick(er), the supplements will not make all that difference to me, but when I stay clear of food that I can't tolerate well, things like magnesium makes a big difference.

 

[Tito]

If you want my opinion, supplements for ME is a total waste of money. Without them, I have more cash and less crash...

 

[optimist]

If you want my opinion, supplements for ME is a total waste of money. Without them, I have more cash and less crash...

I guess we have different experiences, and everyone must find out about themselves. For me, most things that I've tried so far either had no effect, or even at times made me worse. BUT, every now and then I do come across a supplement that really makes a difference, and for that reason I will not cry over the money that was lost on useless supplements. I see them as an investment. And also, I do believe that not feeling anything isn't necessarily the same as nothing good is coming from taking them.

 

[Tammy]

@Aerose91..................I have been thinking of doing the same thing for some time now.......I'm suspecting that your results will be the same for me..........just a gut feeling. Don't want to be a debby downer for any readers.....just saying it like it is. Having said that I don't think I will stop forever and not ever try anything again.....I'm too unpredictable that way. Every time I tell my friend.....that's it I'm not buying anymore supplements.......I end up buying anyway. I think for now though I'm going to give my pocketbook a good break. Ok.......3rd edit for this post......exception: My malic acid..........not going to stop.

 

[JAH]

For me, most things that I've tried so far either had no effect, or even at times made me worse.

This is also my experience. Nothing, or worse.

 

[Tally]

I've had ME for 5 years and that was my experience as well. No matter what I take and at what dosages it simply does not affect me. Even to the point that I never have any bad sideeffects from them. And yes, I even tried getting tested for food intolerances and followed very strict regimen as well as complete gluten-free diet later on. Again, no change.

So far only pacing has any noticeable effect. As soon as I overdo it (which for me can be as little is sitting at a table and talking to my family for 20 minutes) I get increased pain, brain fog and sleepiness 24 hours later.

 

[Aerose91]

I didn't want for this to sound like a negative post, just that it seems like this issue is much more deeply rooted than what a supplement can reach.

I'll admit I'm envious of those who see some discernable differences while taking certain things- I just feel like my health problems are much greater than that.

@optimist. I have a baseline that if I do everything right (rest and diet) I can stay at, but never improve past. If I overexert or my diet is sub-par I will feel a little worse. My diet is impeccable though. I'm a nutritionist and was gluten, dairy sugar and soy free for about a decade before getting ME. I also follow strict paleo and GAPS just to make sure there's nothing getting through that hurts me. I really can't improve anything any further.

 

[Mij]

@Aerose91 I find the only supplements that have noticely made a difference for me are the ones that I was deficient in. One supplement that I'm currently experimenitng with is higher dose CoQ10. This is one I feel is improving with recovering faster when I overdo. There are concrete studies on CoQ10.

 

[shah78]

I agree with you for most supplemenst. However you couldn't pry my mb12. adb12, folate, active b complex and potasium from my dying hands. Nor the freetheanimal.com pre/probiotics either. Everything else is "Negotiable". Great idea Aerose!

 

[heapsreal]

I think it can also depend on where one is at. Many supplements one wont feel alot of response from i guess until the issues closer to the source are treated, i say that because we really dont know the source.

I take antioxidants as they have good science behind them and there enough science out there to show we have alot of oxidative stress going on, so they may be protective.

I used q10 and acetyl carnitine for a long time and never really noticed a great deal other then some stimulation the first few days but took them as they are mostly low in cfs patient studies. But recently jacked the doses up to the doses used in mito disorders and got a more positive response.

But i think alot of issues we are using supplements for are secondary issues that might not help until we can improve the infectious and immune side of things and that seems very individual for everyone too?

 

[cmt12]

When a car is low on fuel, then you simply put gas in the tank. Unfortunately, many doctors view chronic illnesses and ME the same way, but this view is outdated because the imbalance is ongoing. It's like putting gas in a tank that leaks. It's a hard realization for people to grasp - telling them that taking a supplement for something they are deficient in is going to most likely be a waste and at best a short term fix.

 

[*GG*]

@Aerose91 I saw a couple of typos in your first message. Were you making as many errors before? LOL Just trying to have a little fun here. I use the Google browser, so I am prompted to correct typos. Probably makes me look more with it than I am!

GG

 

[taniaaust1]

I decided to conduct a sort of experiment recently. I (like I'm sure all of us) am on a bunch of supplements but have never felt any noticeable difference from anything, so I decided to taper off everything to see if there's a difference. Here's what I currently take daily.

High dose Phosphatidylcholine
High dose Theracurmin
Bicailin
Valcyte
LDN
Vitamin D
B12
Magnesium
Tyler panplex digestive support
Dr Enlanders electrolyte blend
Dr Enlanders Hepapressin (once/week)
Injectable b complex (once/week)


I tapered off everything correctly and it's been about 1 month now and like I suspected- No difference whatsoever. My brain is still as bad as it was, my tolerance to energy expenditure hasn't changed and my muscle weakness/fatigue levels are the same

When I first got adrenal fatigue a few years ago I saw slight changes depending on what supplements I took- now since ME there is nothing. It makes me think that my health problems are much more deeply rooted than any medicine can touch. In the interest of saving money, I'm staying off everything.

Wow, it surprises me whenever I hear of someone taking so many things which arent doing anything for them. Glad you've realized this.

 

[Aerose91]

@Aerose91 I saw a couple of typos in your first message. Were you making as many errors before? LOL Just trying to have a little fun here. I use the Google browser, so I am prompted to correct typos. Probably makes me look more with it than I am!

GG

It's a combination of my typing that on my phone and being really loopy.

 

[chronix]

Same here. MB12 gave me big boost in energy for about a month. Then had a big crash and now it doesn't matter how much I take - no effect.

Certain abx gave me almost instant and complete relief of the worst symptoms, especially pressure in the head and cognitive dysfunction. As with MB12 it ceases to work after a while or after a crash. it's as if the body adapts to anything that works and keeps you ill which makes me strongly believe ME/CFS is a state purposely maintained by the body. I'm hoping rituximab will be the drug that brings us back to life.

 

[daisybell]

The only one I take that seems to make an obvious difference is magnesium. I definitely feel like I get worse muscle cramps without it.

 

[soxfan]

I have also tried tons of different supplements and spent tons of money and I have found nothing that helps me either.
I will read up on something that has helped someone and think it will help me too...but nope.

I have to admit I just re-ordered Adrecore because I hadn't been on it in a long time and I really think my adrenals are flipping out again. I would rather support them then just take cortef. I also ordered a couple others to go along with the Adrecore in order to help with that.

@Tammy- I remember taking Malic Acid when I first became ill almost 10 years ago but I can't remember why I was taking it. How does it help you?

 

[BadBadBear]

I didn't notice much improvement from supplements until I added T3 for a thyroid hormone conversion issue. Now I can tell when I run out of methyl B's or when I get low on salt. My energy totally dies - sometimes that mean just going from barely any to none, but it's noticeable - like an engine turning off. It took adding T3 to potentiate the others, and I suspect T3 would cause me huge issues without proper Bs & adrenal support (aka salt).

Hopefully at some point you will find the match that needs to be struck to start the energy fire burning.

 

[optimist]

When you guys talk about salt, you mean normal ocean salt?