Supplements seem to have zero effect on me

[pspa123]

I have been reading this forum a very long time, and occasionally have posted. While I have concluded that I don't strictly speaking have CFIDS, I do have significant fatigue, pain and anxiety and have therefore thought there was enough overlap that at least some of the knowledge here might be relevant to me.

Obviously, much of what is posted here is about supplements and people's positive and negative reactions to them. I myself over the years have taken countless supplements and been on different regimes at different times, for different reasons, based on different recommendations (in some cases from very respected people). All the way from nothing except Vitamin D, to 10 or more supplements at a time.

Most recently, I tested mildly positive for pyroluria, which I posted about, and have been trying that protocol. Indeed, it is that most recent experience that has inspired me to post this.

So here is where I am going with this. As strange as this may sound, I honestly can say I never have felt any effect -- positive or negative -- from any supplement, or supplement regime. Nothing I have tried has made any positive or negative difference in any of my symptoms, or made me feel any different from when I am taking nothing. Has anyone out there had this experience? And does this mean, as I suspect, that in my case my symptoms must be (and I hate the dichotomy, but use it anyhow) psychological and not physiological in origin? In which case I supposed I should feel blessed.

Thoughts welcome.

 

[learning]

most supplements do not have immediate effects and you might have a very slow metabolism. have you ever taken 100 mcg of niacin and experienced skin flushing about 30 minutes later?

 

[pspa123]

No, but I am not talking generally about not seeing immediate benefit or detriment -- I am talking about no effect after weeks and months of trying regimes.

 

[learning]

You would only experience changes to your symptoms if you start taking something that your body needs. For example if you are deficient in vitamin b1 and you start taking it you will know that you needed it. If your body already has enough, it will excrete the excess and you shouldn't feel anything. What supplement have you taken in the past that you were expecting to feel a result from?

 

[pamojja]

I am talking about no effect after weeks and months of trying regimes.

With a very chronic disease like PAD it took me a year that most serious symptoms improved first, 6 years till a 60% walking-disability was revoked.

I myself over the years have taken countless supplements and been on different regimes at different times, for different reasons, based on different recommendations (in some cases from very respected people). All the way from nothing except Vitamin D, to 10 or more supplements at a time.

I've been only on one regime now for 10 years, and that included every nutrient and herbal with some benefit for my conditions I could afford. Always slowly introducing and gradually increasing doses for finding optimal intake, and I still haven't found that for many nutrients yet.

As strange as this may sound, I honestly can say I never have felt any effect -- positive or negative -- from any supplement, or supplement regime.

Same with me, no negative effects at all. Small effects in the short term (for example high dose vitamin C on the spot cleared a 2-years persistent skin-rash on my back; works as well as any prescription antihistamine for me), and due to my persistence a lot of positive effects in the long term.

 

[Wishful]

I can't recall any long term benefits from supplements either. I suppose I get enough from my diet, so any supplements just make my urine more expensive. I've had some effects from specific supplements the first time I take them, but the effects don't continue. My guess is that the abrupt increase in serum level causes some changes, but then the body adjusts to it, or the body increases its ability to flush out the extra.

I do benefit from T2 or iodine, but only one dose every 21 days. It's the abrupt increase that does something, so it doesn't fit the 'long term benefit' category.

 

[pspa123]

You would only experience changes to your symptoms if you start taking something that your body needs. For example if you are deficient in vitamin b1 and you start taking it you will know that you needed it. If your body already has enough, it will excrete the excess and you shouldn't feel anything. What supplement have you taken in the past that you were expecting to feel a result from?

The list is so long I don't remember much of it. Among the things that have been recommended to me or I tried based on my own initiative have been B6, B12,C, biotin, methylfolate, TMG, zinc, magnesium, taurine, 5-htp, various herbs and combination products, and I am sure there is much more.

 

[Wolfcub]

So here is where I am going with this. As strange as this may sound, I honestly can say I never have felt any effect -- positive or negative -- from any supplement, or supplement regime. Nothing I have tried has made any positive or negative difference in any of my symptoms, or made me feel any different from when I am taking nothing. Has anyone out there had this experience? And does this mean, as I suspect, that in my case my symptoms must be (and I hate the dichotomy, but use it anyhow) psychological and not physiological in origin? In which case I supposed I should feel blessed.

Thoughts welcome.

I have had the exact same experience. When I first (suddenly and out of the blue) became unwell with what felt like a flu illness, nothing I took which usually relieves such symptoms for me, and shortens the course of the illness -worked at all!
Herbal supplements acted as if I'd just drunk water instead (and those are strong and effective anti-microbial/anti-viral/ immune support herbs)

Vitamin supplements were about the same. I very occasionally felt a slight help (which passed in an hour or so) from taking 2000mg vitamin C. But that stopped working too.
I tried high dose vitamin B complex an dthat seemed to stress my system a bit -so had to go back to the daily "grocery store" one-a-day variety which either do no harm, or have no effect ...and I'm unsure which.

Anti inflammatory herbs actually seemed to make me the tiniest bit worse over a few days -either that or co-incidental with a crash anyway, and maybe they just weren't doing anything? I don't know.

Now that's weird because herbs always helped me before and their effects quite marked....so what's changed?

....And I don't know much at all about the nature of "psychosomatic" disorders, but I do wonder if an illness had a strong psychosomatic element (you know -the "it's in your head" theory) -then wouldn't there be more likely to be a response to medicinal supplements? Via the placebo effect??

 

[Mary]

No, but I am not talking generally about not seeing immediate benefit or detriment -- I am talking about no effect after weeks and months of trying regimes.

This doesn't mean it's all in your head. There are several possible reasons why you have had zero results from supplements you've tried:

1. They may not have been what you needed
2. You may not have taken enough
3. You may have malabsorption, be low in stomach acid, which would prevent any supplements from working properly
4. You may have a load of toxins in your body which would prevent you from seeing any benefit

You said above you haven't tried B1. So you may not be taking what you need even though you've tried several different regimens. I've tried dozens of things over the years, and a few have helped me. People with ME/CFS are often low in intracellular potassium - this won't show up on blood work. It caused significant fatigue for me until I discovered this some 8 years ago. I also discovered I have an issue with low phosphorous, which also caused severe fatigue, but I doubt many are checked for this. I would bet there are many things you haven't tried. e.g., have you tried branched chain amino acids? and if so, how much?

Have your adrenals been checked? Weak adrenals caused significant fatigue for me. A chiropractor who does muscle testing was the one who found this problem for me. He gave me an adrenal glandular which helped a lot. But muscle testing showed that I was so weak, I needed 3 x the regular dose. If I had just taken the amount recommended on the bottle, I probably would not have noticed much difference.

If you're not taking enough of what you need, you won't see much in the way of results either. It wasn't until I started taking 10,000 mcg. of methylcobalamin that I noticed a positive benefit. Injections 3 x a week did nothing for me. But when I started taking 5,000 mcg. 2 x a day, it finally made a difference.

Many here are low in stomach acid. If you're low in stomach acid, it will prevent absorption of nutrients from food and supplements alike, another possible cause of not seeing any results.

For many years I had significant problems with toxins in my body. I felt so sick so often, that even if I was taking what I needed, feeling awful from toxicity would have masked any benefit from my supplements.

Have you had any testing like Nutreval done? Nutreval showed a severe B6 deficiency for me. I see you've tried B6, but how much? and in what form? P-5-P is supposed to be the best and most absorbable form.

I think the thing which has helped me the most with all of this is muscle testing done both by my chiropractor and eventually myself. It's helped me determine what I need, and, just as crucial, how much. It was invaluable in helping with detoxing. It's what led to the discovery of my low stomach acid. I could go on.

One other thing - not all brands of supplements are equally good. In general I have found that if something is very cheap, it's usually not very good. There's a reason it's so cheap. So you have to be careful about what brands you buy as well as dosing.

 

[Wolfcub]

That is really really helpful @Mary and additional perspectives. Thank you.

 

[pspa123]

Agreed, a good post. Still, no matter what, one could always posit that there is something one has not tried, or has not tried enough of for long enough. It becomes an endless quest. I feel that I am at the point where the fact that NOTHING I have taken has had ANY effect must mean something. I don't think it's low stomach acid (I've read through all that and it didn't seem to apply to me) or some kind of toxic overload (ditto). I haven't done Nutreval, but I did all the organic and amino acid tests and nothing of any import showed up.

 

[Mary]

@pspa123 - it's up to you whether you keep trying or not, and what steps you take to find out what it is you may need. But I'm not going to say it's time to give up.

I'd been sick for 16 years before I discovered branched chain amino acids 4 years ago, which cut my PEM recovery time in half. This has been huge for me. Many times I felt like giving up, and then after some days I'd get back in the harness. I didn't want to give up, and am glad I didn't. And, I just learned yesterday about another member who is taking 3 x the BCAAs that I am and it's made an even bigger difference for him, so I'm going to increase my dose and see what happens. If I'd given up 10 years ago, I'd still be as sick as ever with no improvement. Ten years ago I had 1 (2 if I was lucky) "good" days a month, where I wasn't crashed or sick or detoxing or wiped out from low potassium etc. I would still crash if I overdid it on a "good" day but at least once in a great while I'd feel almost well, for a several hours. Well, now I often have 2 or even 3 "good" days a week, where I'm not sick or crashed or detoxing. I still am very limited in what I do because I crash if I do more than 3- 4 hours of light activity even on a good day, but overall feel much better. And this is all due to using my self as a guinea pig over and over and over again.

And 20 years on I'm still finding things that help - e.g., I just learned in the last several months that magnolia extract from Bulk Supplements is an amazing herb for sleep. But magnolia bark from several other companies did next to nothing for me. Well, I desperately needed sleep so wasn't about to give up and am so glad I stumbled across this product.

You've determined you don't have low stomach acid by reading about it. I don't think that's a good way to see if
have low stomach acid. There's a simple test you can do at home which may give you an indication about low stomach acid: dissolve 1/4 - 1/2 teaspoon of baking soda in 8 ounces of water. Drink on an EMPTY stomach. If you don't burp within a few minutes, it can indicate low stomach acid.

You could be right, there may be no help for you at all. Or, you may have been going about things in the wrong way. I strongly recommend muscle testing, though most people don't want to try it.

One thing I urge you to remember is that it's not normal to have significant fatigue, pain and anxiety. Doctors are way too fond of telling us it's all in our heads when they don't have answers. They don't know enough about how the body works and what it needs.

 

[geraldt52]

...I suppose I get enough from my diet, so any supplements just make my urine more expensive...

LOL. I think that, in general, when and if supplements were subjected to double blinded testing that would be by far the most likely result.

I experimented for years and wasted my money on probably a hundred of different things, and I can honestly say that the only thing that made any substantive, repeatable, positive difference was lysine, relative to the herpes virus. On the other hand, I could list dozens of supplements that ended up making me substantially worse, and worst of all it often took me many months to figure it out. No more.

There's a reason that the manufacturers of supplements refuse to do blinded testing, even informally, and I don't buy that it's the prohibitive cost. How about just an informal, well documented, pilot study? They don't do the testing, because they know that the result wouldn't help their sales...

 

[taniaaust1]

I have been reading this forum a very long time, and occasionally have posted. While I have concluded that I don't strictly speaking have CFIDS, I do have significant fatigue, pain and anxiety and have therefore thought there was enough overlap that at least some of the knowledge here might be relevant to me.

That's where you probably gone wrong, by assuming the things people take for one illness may fit you when you may have something entirely different. Those few symptoms are common in sooo many different things. If you do not meet a diagnostic criteria for a certain thing (CFS is a waste basket diagnoses), it is likely you could have a completely different illness going on esp when there are no blood tests for something like ME.

With that being said even when one does know for sure one has something like ME (I liked to make sure I was getting common ME test abnormalities showing up too even though they are not part of currently any offical diagnoses) its still a case of with this illness finding supplements which will help.

Even then it can be like a needle in a haystack. Ive personally found it useless to be "guessing" what may help and after trialing around 30 different supplements over years with no good benefits (some had negative effects), I started to base what i trial on my test abnormalities instead, only be doing that have I found things which were helpful to me.

So i suggest to focus more on finding out what is wrong with you so you can be more successful when it comes to what you are trialing.

To help you understand just how much it is searching for needles in haystacks even if one knows one has ME. I'll say the following

When one studies the supplement success in people who fit ME criteria (of all the things they are taking), the highest percentage benefited by a single supplement type was only at 25% (around 25% have a positive result, not cure but it just helped some to one of the B supplements). For most it was to B12 (if Im remembering it was around two thirds of that 25% marked B12) but B12 that comes in different forms and the form taken was often important to if the person was finding it helped or not as many found one form doesnt help at all but another form of it did (this was the case in me, and then of cause there is dosages differences too).

For some it was Hydroxocobalamin helped them, for others it was Methylcobalamin. So the change even with trialing just one of the B12s when you know what diagnoses you have and getting any benefit out of it at all is far less then that 25%.

One third of that 25% so around 8% of those with ME, who responded that B helped them responded positivitely, it was to B2 or B6.

Sadly for analysing the results of those who have ME and all their supplements and what has helped some and what hasnt. That B12 came up way on top of everything else but as you see its still quite low the numbers who find it helpful.

Now there may be situations in which someone makes it more likely that could help eg if one knows one has methylation issues eg MTHFR mutations, knows one is deficinent due to testing etc etc.

Nothing I have tried has made any positive or negative difference in any of my symptoms, or made me feel any different from when I am taking nothing. Has anyone out there had this experience? And does this mean, as I suspect, that in my case my symptoms must be (and I hate the dichotomy, but use it anyhow) psychological and not physiological in origin? In which case I supposed I should feel blessed.

no, not at all. It just means you havent had the correct diagnoses which of cause could be psychological but of cause may not at all be as your symptoms can be in many illnesses, even things such as cancer. All which can be said about your illness right now is that it isnt known what it is.

You do need to take care though with anxiety and just a couple of symptoms.. as it could of cause be psychological as anxiety can cause a lot of symptoms. I know as I have a couple of family members who do not have ME/CFS but just have severe anxiety. Its only something you may be able to figure out if your illness is psychological or not.. when you are happy and not stressed, do you symptoms go away or not? if they do, I'd think then anxiety related. Logic should be able to be used to help work out if an illness is psychological or not.

 

[taniaaust1]

One of my two sisters who is suffering from some severe work anxiety currently, she has a cough which has got a lot worst (she previously had just a chronic cough), to the point now she's constantly coughing with very bad coughs (im surprised she's not ended up in hospital due to it) and we are currently having a hard time figuring out if its all due to her asthma, anxiety related or due to something else. All she can do is keep having tests done and see specialists while she tries to figure it out.

She does cough more when stressed but then maybe the stress from her work is knocking her immune system around and maybe its then something else happening (Im hoping she's not starting to develop ME/CFS so waiting to see if more symptoms come in which would indicate). I "think" she may have something more then stress/anxiety going on, just dont know what currently. Some illnesses can be hard to diagnose and may change with time when it then suddenly becomes clear what was wrong.

If you doctor runs out of ideas and isnt sure.. go to someone more experienced and able to do a diagnoses. Keep seeking answers. best luck figuring it out.

If you are not sure if your issue is psychological or not (i find that most with ME very clearly know it isnt psychological so if you are 'unsure" it may also indicate you may have something more along those lines going on).. you should try out some therapy and just see if its helpful to you or not. Even if it doesnt help it may help you clarify to yourself what is going on with you.

 

[learning]

pspa123 - have you had hair mineral analysis testing done? Its not very expensive and helped to answer a lot of questions for me.

 

[percyval577]

Me helps negative "supplement", but rather on the long term (pronounced on the short term only at the beginning, after days or weeks).
It´s low manganese (lowering the iNOS); and avoiding sugar and lowering to some extent fat (lowering ACh).

With manganese it could be a trap, as it seems that the most of us are low on manganese (and then nevertheless I lower it).
There might also be a circuit iNOS -> NO <-> ACh, which would also make up a trap.

It works slowly (too slowly for doctors to grasp), over years, with relief of pain (too difficult to measure for doctors), improvement of sleep, but at least for me with a slightly more difficulty to think, and this tiny little bit causes disability (too easy for doctors not to evaluate on their own).
So yes, it´s more dangerous than I had thought.

 

[pspa123]

LOL. I think that, in general, when and if supplements were subjected to double blinded testing that would be by far the most likely result.

I experimented for years and wasted my money on probably a hundred of different things, and I can honestly say that the only thing that made any substantive, repeatable, positive difference was lysine, relative to the herpes virus. On the other hand, I could list dozens of supplements that ended up making me substantially worse, and worst of all it often took me many months to figure it out. No more.

There's a reason that the manufacturers of supplements refuse to do blinded testing, even informally, and I don't buy that it's the prohibitive cost. How about just an informal, well documented, pilot study? They don't do the testing, because they know that the result wouldn't help their sales...

I guess I should be thankful at least for not having the experience of getting worse. I can honestly say that has never happened to me. My working theory now is that since I do eat a very good and diverse diet, I must not have any real deficiencies, and I also must not have any conditions that would create a need for a super-physiologic dose of anything (unless you want to count my recent pyroluria testing, about which I am still very skeptical).

 

[Learner1]

There's a reason that the manufacturers of supplements refuse to do blinded testing, even informally, and I don't buy that it's the prohibitive cost. How about just an informal, well documented, pilot study? They don't do the testing, because they know that the result wouldn't help their sales...

There have been thousands of studies on various nutrients, quite findable on PubMed, should one care to look. Many show significant benefit. Others don't, generally because doses were too low, or appropriate cofactors weren't included.

One of the best gifts I've ever been given was a wallchart diagramming biochemistry. Examining it for any length of time will tell you why it's ridiculous to expect a single supplement to do anything.

Our biochemistry is a set of intricately interrelated processes such that any individual biochemical relies on a number of other biochemicals to drive a specific process. And many are used in multiple processes, so that if one process is overly used, the others competing for that same nutrient may be starved.

Our belief system that diseases are caused by a deficiency of a drug proven by a drug trial is a bit silly if you really think about it. Sure, a drug can help, but the serious side effects that can and do emerge are evidence that they don't work in isolation either.

It behooves us to have respect for the complex machines we are and to inquisitively and thoughtfully alter our biochemistry to effect positive change.

Even then it can be like a needle in a haystack. Ive personally found it useless to be "guessing" what may help and after trialing around 30 different supplements over years with no good benefits (some had negative effects), I started to base what i trial on my test abnormalities instead, only be doing that have I found things which were helpful to me.

This sounds very wise! This is the approach my doctors have used to help me make great imptovements over time.

My working theory now is that since I do eat a very good and diverse diet, I must not have any real deficiencies, and I also must not have any conditions that would create a need for a super-physiologic dose of anything (unless you want to count my recent pyroluria testing, about which I am still very skeptical).

So, doing all of that, you must be well, then?

Studies have shown:

• It is virtually impossible to get 100% of the DV of each nutrient within the calorie budget people have. As I recall, it's somewhere around 10,000 calories that one can get 100% of each nutrient
• Soils are depleted and food is not as nutritious as 40, 60, or 100 years ago.
• 70% of adults are short of magnesium, and majorities are deficient in many othrt nutrients
• The ME/CFS metabolomics studies have found deficiencies in B vitamins, lipids, and amino acids.

So, you must be extremely lucky and extremely healthy to have escaped these deficiencies that plague so many of us...

Having done NutrEval tests for 10 years and having seen about 150 from others, no one is not deficient in something. Healthy people are in much better shape, but everyone I've known with any significant health problem has significant deficiencies.

I've had nutrient IVs that have been able to change my symptoms, mood, and level of fatigue within 30 minutes. It's a bit of a radical approach, but my body needs a lot of nutrient support, especially my mitochondria, liver, and deficiencies caused by fighting infections.

This is on top of twice weekly B vitamin injections and a comprehensive oral supplement program. And, I can tell you, that, aside from NAD+, BCAAs and glutathione, there are no other single supplements that have a marked effect on me, yet I can see by my labs and my steady forward progress that they are doing a lot of good.

Getting proper testing as advised above, then developing a thoughtful comprehensive supplement program has the potential to greatly improve one's outcome, ideally with the help of a functional medicine doctor.

 

[geraldt52]

And yet, innumerable people who get their dinner from a dumpster, supplement it with cheap wine, and sleep under a bridge are well...while innumerable other people who obsessively watch their diet, spend most of their day in a warm bed, and take a couple dozen supplements every day are sick. Perhaps the "standards" of what constitutes a "deficiency" are incorrect, or at the very least have been exaggerated...