I wasted an extreme amount of $$ money for supplements with no effect

[amaru7]

I must not be the only one. Many very convincing studies and MD Potocols failed me and I don't want to think how much it was that I wasted, but it sure is in the thousands, maybe 10k+ on tests and supplements.

Did any of you have the same experience?
Just wanted to say be careful and think twice before wasting any of your money.

 

[maddietod]

In my 30+ years of illness, I've tried tons of supplements and a few machines. I just keep on trying - we're all different.

I finally found something 3 months ago that's making a huge difference (PQQ). This supplement increases mitochondria, so I probably have a primary mitochondrial issue. I can't think of any other way I could have discovered this than continually trying things that sounded potentially useful.

I hope you find something that helps, soon.

 

[Bansaw]

I must not be the only one. Many very convincing studies and MD Potocols failed me and I don't want to think how much it was that I wasted, but it sure is in the thousands, maybe 10k+ on tests and supplements.

Did any of you have the same experience?
Just wanted to say be careful and think twice before wasting any of your money.

True, me too. BUt you've got to try things and see if they work for you.
Now I am convinced that proper diet, good quality rest, right amount of exercise, and caring for the spiritual needs through prayer are the most effective drivers in achieving better health.

 

[Bander]

We're all different, so we will each have different experiences, but I have had largely the same experience of trying tons of things and finding very little that has much effect. You mention wasting money, which I have done, but I think I'm more disappointed that I wasted so much time and concentration and mental energy to research these things and try to figure out whether they are helping. I have a type-A personality, so I tend to focus on a problem until I get it solved, but I've found that focusing too much on thinking about cfs has often not been good for me.

What has worked best for me is switching to a ketogenic diet. Nothing has had as profound of an effect as that change other than medications. The only supplements I use currently are Align probiotics (double-blind study for cfs patients), digestive enzymes (recommended by Chris Armstrong for those on a ketogenic diet), Magnesium (don't know that it does much but it's recommended for ketogenic diets), and baby aspirin (recommended for men my age). Before I went on the ketogenic diet, I was eating 45g of 85% dark chocolate daily based on a double-blind study for cfs patients and I think it helped boost my mood. I'm considering taking a salt tablet also for the ketogenic diet because my levels are at the low end of normal and my body seems to be struggling to keep up the level of fluids.

 

[Chocolove]

@amaru7 It would be a good idea to get an idea of your nutritional status. Common deficiencies of certain nutrients can prevent utilization of other nutrients...making many supplements a waste of time if the needed co-factor is not present.

The body processes are operated through different enzymes, which are like keys to start the various machine-like processes in the body.

Magnesium is a very common deficiency. Many of the body's enzymes (last count I recall was around 900 from viewing enzyme databases online) require magnesium.

Thiamine (or vitamin B1) enzymes require magnesium as a co-factor. Therefore while you may need thiamine, you can take all the thiamine supplements you want and they will be ineffective if you don't have the magnesium in your system. Yes, that means a loss of money and time, with worsening health.

Further consumption (swallowing) does not equal absorption of a substance. Some people need to take supplements of enzymes and other substances to enable their body to absorb things needed, since they have gut issues of one form or another.

It would be a good idea to find a medical practitioner who has nutritional training. Most MDs have no nutritional training which is a very sad state of affairs. Some "functional" practitioners have nutritional training and can be more of assistance.

Establishing any nutrient deficiencies that you have may thus go a long way towards improving your health and allowing your body to utilize the supplements.

 

[pamojja]

Many very convincing studies and MD Potocols failed me and I don't want to think how much it was that I wasted, but it sure is in the thousands, maybe 10k+ on tests and supplements.

Sorry to hear about your disappointing experience.

My ME/CFS actually started with many infections, then a serious PAD, COPD and prediabetes. Applying comprehensive supplementation protocols (like Linus Pauling's, with basically almost every essential nutrient in at times high doses) basically eradicated all symptoms of these usually deathly diseases, but still left me with the usual ME/CFS symptoms.

So in my case still worth every penny.

 

[notmyself]

i can open a naturist shop with everything i have easilly..I don t regret it becuase i found something that change my health completelly, i make huge improvements with Quercetin and good all around multivitamin and minerals..

 

[perovyscus]

Start buying your supplements at GNC - if they do not work, return them. If they don't have the one you need, well, it probably is not going to work anyways!

 

[Stretched]

I really believe food/diet can affect how we feel and function. Certainly food is the most ubiquitous drug. ‘We are what we eat’ rings true for me.

Supplements are part of the foodstuff chain and therefore can affect functionality on many levels. The trick is to learn which ones work best for our individual systems and then to get a quality and amount that makes a difference. Label doses are usually minimal
supplemental doses which can indeed be a waste of money. They omit maintenance and therapeutic doses.

For good advice in using supplements there are some helpful handbooks/texts for reference. They are expensive, but IMO worth the money. A good example is the Clinician’s Handbook for Natural Medicines (2nd edition is my first voice and there’s a lesser documented 3rd edition,as well), written by an integrative MD team who knows their stuff. Also, The Textbook of Natural Medicine, and Clinical Naturopathic Medicine are good guides, as well as LEF’s Disease and Prevention tome.

These practical books give documented protocols with insights for what to use, how much, and what to avoid. They even address the conditions correlated. They are especially easy to cross reference when downloaded (on Kindle, et al, from Amazon.com.).

 

[Mary]

@amaru7 - I have spent thousands of dollars over the last 19 years primarily on supplements, hardly any drugs. I've used myself as a guinea pig after doing lots of reading. I would guestimate that 95% of what I've tried has not helped; however, the 5% that has helped makes it worth it.

I was fortunate to have a doctor who got me on a good basic supplement regime (probably good for any healthy person), and then almost everything that has helped specifically with ME/CFS has been through my own research and experimentation, although I highly recommend Nutreval testing. It pinpointed a severe B6 deficiency and also a leucine deficiency. The leucine deficiency led to research re BCAAs and ME/CFS and PEM, and since I started taking BCAAs almost 3 years ago, my PEM recovery time was cut in half. Plus my energy increased a bit.

The primary things I credit with helping me have more energy are (though I'm still quite limited in activity due to PEM; I have days where I feel normal, but I still have to ration my energy carefully - 3-1/2 - 4 hours of light activity - otherwise I crash):

d-ribose
thiamine
B6
folate
methylcobalamin
potassium
BCAAs
adrenal glandular
andrographis (for chronic sinus infections - very effective)

I also take a bunch of other supplements (magnesium, CoQ10 etc.) but these are the ones where I noticed the biggest difference when I started taking them.

Also I had a ton of detox reactions for many years, I reacted to many things quite strongly and would feel sick, tired, woozy, spacey, generally poisoned. A liver detox plus the amino acids glycine, glutamine and inositol eventually took care of this. It's a long story but I almost never have detox reactions any more and they used to be a huge part of my life. I have to remind myself how bad it was. If I wasn't crashed or sick I was detoxing - something always making me feel like crap.

I also credit chiropractors trained in muscle testing who were particularly helpful with detox issues, digestion in general and my adrenals. My digestion used to be chronically screwed up (and thus would feel crappy - I wasn't absorbing nutrients properly) until I found I needed to take betaine HCL with pepsin with meals.

So it's been a long slow journey but I am noticeably better than say 10 years ago. So I don't regret money I've spent on things that didn't help - though it would certainly be nice to have it back!

 

[drob31]

As another poster mentioned, magnesium is super critical. The type you take is also important. I find magnesium glycinate effective, and take it at large doses at night.

Vitamin C and Alpha Lipoic acid have also been crucial in controlling blood sugar as my adrenal dysfunction has caused dysglycemia, which tends to cause almost any symptom. ALA and vitamin C are also super potent anti oxidants.

 

[justy]

Ive spent thousands of pounds on Drs, supplements and drugs and nothing has helped, or at least helped lastingly. In fact a lot of what i have tried has made me permanently sicker. Now i dont try or do anything.

 

[Thinktank]

So i'm not the only one. I too have spent a huge amount on supplements, doctors, medication and testing. If i add flight fees and hotel bookings to see these doctors it's almost 200.000 euro (a bit over 200.000 USD).
I was promised i would get better, instead i was misdiagnosed and overdiagnosed time after time and treatments have just made me worse.
Self education and my own experiments helped me more than any of these doctors and their treatments combined. I was desperate to get better quickly, now i regret having listened to them. Not only that, i don't trust doctors anymore and i don't follow advice until i've researched the heck out of it by myself.

I could have bought a nice house with that 200k...
(Oh..1/4 of the 200k also includes the costs of my wife who also got misdiagnosed with "chronic lyme disease" and treatment made her lupus worse, i was led to believe that i might had transmitted the infection to her sexually, the guilt that i lived with for 3 years was huge... i blame myself partially for believing that and as a result making her lupus worse. But i'm ranting now, back ontopic.)

 

[pamojja]

So in my case still worth every penny.

If i add flight fees and hotel bookings to see these doctors it's almost 200.000 euro (a bit over 200.000 USD).
I was promised i would get better, instead i was misdiagnosed and overdiagnosed time after time and treatments have just made me worse.
Self education and my own experiments helped me more than any of these doctors and their treatments combined.

Umm. Sorry to hear again. That's really disappointing . Always envied those who could afford every test and doctor. But better reconsider myself glad for not having being able to (spend almost 5.000 Eur per year, for supplements and a few self-paid lab-tests - nothing left for doctors - x 9 years).

But on a second look... maybe not, with that kind of running health-costs just to be able to work part-time, I'm in the same place in just 31 years too!

But then again, how all the wealth loses it's importance being really ill?

 

[Mary]

Ive spent thousands of pounds on Drs, supplements and drugs and nothing has helped, or at least helped lastingly. In fact a lot of what i have tried has made me permanently sicker. Now i dont try or do anything.

It ain't fair! I think we'll get some answers, sooner rather than later - xxxing my fingers for you --

I've reacted badly to many things I've tried but I've been fortunate that nothing caused lasting harm (at least that I knew of!) Muscle testing done by a competent chiropractor has been invaluable in helping me navigate the minefield of supplements and other treatments, both in helping to figure out what the heck was going on and also how much of what to take, and what not to take. (I do my own version now but generally confirm things with the chiro) I don't think I could have gotten where I am without it.

 

[Stretched]

I’ve brought this up before - I’m of the mind for legal action against the AMA and it’s Euro counterpart with a huge class action lawsuit for negligence of duty, amongst other irrresponsibilites. It’s justified.

Maybe if others joined in and beat the drum we could get some M.E. afflicted lawyers to take up the cause. It could get self funded.

Whatever the specific outcome, the notoriety would raise public awareness and hopefully generate a political demand for these unions to address their privileges relative to their claimed ‘curing abilities,’ e.g. ‘first, do no harm.’ Then get their constituents educated to deal with fair and just treatment of the public with diseases of unknown etiology - rather than abusive billing for multiple, nefarious, vague protocols which leave patients in a worse condition.