totally agree with Brenda. I wasted so much god damn money on supplements when I was desperate($100-50+ p/month). Remember, it's not always what your missing but something you're already doing that is causing problems. Like brenda said, you can't expect anything from popping some vitamin pills if you're putting stuff like dairy in your body. My advice? stop wasting money and make some big changes in your life (It worked for me, see my post if you're interested in what I did). Good luck!
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Did Vitamins ever help you get better? (orthomolecular treatment)
- Thread starter amaru7
- Start date
My core symptoms were severe fatigue, post exertion malaise and brain fog. I've found the methylation protocol's provided the biggest improvements in that. And when I started with the start low, go slow - I wasn't seeing any improvement... I was trying to avoid negative side effects to the point where I couldn't seem to get any improvement at all.
I found a doctor in Colorado who REALLY ramped up my methylfolate and it was like flipping a switch (for the better). BUT...and it's a big BUT... it may have put me into remission, it also seems like I'm not quite getting the right balance and even when I moderate my activity heavily, I still crash... So, something isn't right.
Right now, I'm still taking heavy doses and trying to figure out how I can maintain it - what tweaks I can make to keep the b vitamins and/or other supplements/nutrients in sync. While I do that I have to take a 'holiday' from taking supplements (none on weekends and one month off for every three months on). I do notice an improvement while on them; but it's not as good as the initial remission... but so far so good, it's been 9 months since my last major crash.
I found a doctor in Colorado who REALLY ramped up my methylfolate and it was like flipping a switch (for the better). BUT...and it's a big BUT... it may have put me into remission, it also seems like I'm not quite getting the right balance and even when I moderate my activity heavily, I still crash... So, something isn't right.
Right now, I'm still taking heavy doses and trying to figure out how I can maintain it - what tweaks I can make to keep the b vitamins and/or other supplements/nutrients in sync. While I do that I have to take a 'holiday' from taking supplements (none on weekends and one month off for every three months on). I do notice an improvement while on them; but it's not as good as the initial remission... but so far so good, it's been 9 months since my last major crash.
Misfit Toy
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Back in 1997 I saw an orthomolecular doctor. He put me on 30 different vitamins and supplements including NADH, tyrosine, C vitamin, B vitamins. My energy and pain became much better and I was able to go to school part time and work.
I was on these vitamins for three years and then he put me on phosphatidylcholine which put weight on me and I had to stop taking it and all the supplements and I started losing a ton of weight and sweating.
So, basically after three years everything positive had been undone. Which makes me question does it even work? I became sicker than a dog and was totally disabled and had to quit my life.
That was the only time that supplements and vitamins ever helped me but it was short-lived and since that time I have never been able to take the same things and have them work the same way. I'm far more sensitive now to things and vitamins and supplements and probiotics just don't work. So many people act like probiotics of the miracle drug and I have not noticed a damn thing with them.
My CFS doc, that's all he really wants to give me. Supplements and vitamins and I've spent thousands of dollars on stuff that is sitting in two closets. I have more vitamins and supplements than I know what to do with.
I could buy myself a nice house with all the money that I've spent including amalgam removal. Chelation treatments, Meyers pushes, etc. mineral IV's with glutathione.
These past two years have been the sickest I've ever been.
I was on these vitamins for three years and then he put me on phosphatidylcholine which put weight on me and I had to stop taking it and all the supplements and I started losing a ton of weight and sweating.
So, basically after three years everything positive had been undone. Which makes me question does it even work? I became sicker than a dog and was totally disabled and had to quit my life.
That was the only time that supplements and vitamins ever helped me but it was short-lived and since that time I have never been able to take the same things and have them work the same way. I'm far more sensitive now to things and vitamins and supplements and probiotics just don't work. So many people act like probiotics of the miracle drug and I have not noticed a damn thing with them.
My CFS doc, that's all he really wants to give me. Supplements and vitamins and I've spent thousands of dollars on stuff that is sitting in two closets. I have more vitamins and supplements than I know what to do with.
I could buy myself a nice house with all the money that I've spent including amalgam removal. Chelation treatments, Meyers pushes, etc. mineral IV's with glutathione.
These past two years have been the sickest I've ever been.
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If the question were, "have dietary restrictions helped you?", then my answer would be 100% yes. Were it not for the dietary restrictions that I follow I am quite sure that I would have been bed bound years ago. It's been twenty years since I first started with dietary restrictions though, and it hasn't made even the slightest difference in the effectiveness of supplements...for me. I haven't just found supplements to be useless, in many cases I have found them to be harmful...often only after a long, drawn out ordeal of trying to figure out what was making me sicker.
personally I think if you are benefiting from vitamins, it's like putting plasters on the holes of a sinking ship. It isn't going to fix CFS. Supplements may give you a false sense of improvement and may lead your condition to worsen like Misfit Toy has mentioned from her own story.
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Hip
Senior Member
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I found high dose selenium helped my fatigue and brain fog noticeably (see this thread), and a few people like myself diagnosed with enterovirus infections found likewise.
Several supplements, especially N-acetyl-glucosamine, were very helpful for my severe generalized anxiety disorder (see this thread).
Prebiotics also helped with my anxiety, fatigue and brain fog (see this thread).
Many people have found the methylation protocol helpful (consists of B12, folinic acid, methylfolate, lecithin).
Some people have found that supplements such as high dose Q10, sodium bicarbonate and branched chain amino acids useful for reducing crashing and PEM (see this thread).
Misfit Toy
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Thank you and yes.
I was dealing with endometriosis at the time and I had it really bad. All the vitamins made the pain go away within one month.
The problem was, after three years of being on the vitamins and having hardly any Endo pain and feeling better, when the orthomolecular doctor had me go off of everything my endometriosis came flying back in. So, yes it was a false sense of reality.
I was never better, I just thought I was better. And then when I wasn't better this orthomolecular doctor didn't want to work with me anymore. Completely dismissed me.
I think the Tyrosine and the NADH and the niacin and all the stuff he had me on for my brain was giving me a boost of energy but it wasn't real.
Sing
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We are very vulnerable to quacks, "cures" and potions. Most of these things aren't dangerous but they consume time, energy and hope. I've written about this before. There is also the placebo effect, which gets in the way of really knowing if something is beneficial or not, or just how beneficial. And then there are some who participate in our groups who may just have a vitamin or mineral deficiency and that is it. So when they discover the missing nutrient, they broadcast it far and wide as if it were the cure for all. Well, if there were a cure for ME/CFS as described by the CCC, we would know it.
We need a new approach and new answer. The best we've come to so far seems to be the wise strategy of pacing, a diet that works for the individual, and whatever movement, stretching,or exercise you can do while staying within your energy envelope. Some also have found a benefit from anti-virals, hormone supplements and so forth--but these do not "cure" ME/CFS. Because if this is what you have, all you have to do is to stop the treatment and back you go. In fact, homeostasis being what it is, you may "go back" anyway, even when you continue a treatment which once provided benefit.
As I said, we are very vulnerable to the latest fad or panacea. Those of us who have had this condition for decades, who have been around the block with supplements, "cures" and "treatments", have learned (excuse me for repeating) that these are very expensive in terms of our money, time and hope.
I will not be chasing any more supplements, fads or "cures" like this until the science is clear and there is solid proof of major improvement or cure. Neither will I be part of a study again, which also has drained time, energy and hope. I cannot afford to be this sort of fool again, but will take my life just as it is.
We need a new approach and new answer. The best we've come to so far seems to be the wise strategy of pacing, a diet that works for the individual, and whatever movement, stretching,or exercise you can do while staying within your energy envelope. Some also have found a benefit from anti-virals, hormone supplements and so forth--but these do not "cure" ME/CFS. Because if this is what you have, all you have to do is to stop the treatment and back you go. In fact, homeostasis being what it is, you may "go back" anyway, even when you continue a treatment which once provided benefit.
As I said, we are very vulnerable to the latest fad or panacea. Those of us who have had this condition for decades, who have been around the block with supplements, "cures" and "treatments", have learned (excuse me for repeating) that these are very expensive in terms of our money, time and hope.
I will not be chasing any more supplements, fads or "cures" like this until the science is clear and there is solid proof of major improvement or cure. Neither will I be part of a study again, which also has drained time, energy and hope. I cannot afford to be this sort of fool again, but will take my life just as it is.
I know one of the things I struggle with - even though I've found supplements that have helped (and yes, you are right, not cured... but helped)... I wonder.
Our condition relapses and remits... every time I start to feel better after starting a new supplement does not automatically mean the supplement helped. It could just be I was 'due' for a remission... and the timing hit just so. I usually only count a supplement as helping, if I feel better on it, worsen while off of it, and feel better again when I go back on it. If I can't 'recreate' the benefit while on it, then I don't connect the use of it with the improvements.
And - I honestly think that the only reason they help me is DUE to unrelated things. I think the ME/CFS stands on it's own. But if I have nutritional deficiencies, food intolerances, etc as well? Then managing them at least lowers one of the things that makes me feel awful and I'll take anything I can get at this point... as much as I want a cure - I'm not finding one... until I do, I'm just managing as much as I can until then.
One of the things I get told by a certain health professional is how many people have been 'cured' by giving up sugar. I drink ONE (just ONE) Pepsi a day - it's the only caffeine I get. I don't drink coffee nor tea, nor do I want to. I drink more water than I used to... but I still drink my Pepsi. I have it on my list that if I've gone through everything else, maybe I might consider giving it up, but frankly? I'm not there yet and won't be there for a long while. When it comes right down to it? In my opinion? Pepsi doesn't cause ME/CFS. I'm sick and dropping my one-true-love beverage? Isn't going to cure me of anything. Is it more sugar/corn syrup/etc than I need? Probably. But I'm not obese, I don't drink it to obscene levels, and I'll probably have to resist punching the next person who tells me to give it up.
I think the 'oh, have you tried x' supplement suggestions probably mostly fall into that same kind of thing - as if it's a cure all... like the fad diets, etc. For me? I'm only trying the things that I can find connections between my symptoms and recommendations that I can find backed by studies. And if it doesn't help? It's tossed and I go onto something else after thorough research. I'm batting probably 1 out of 10 things that have held promise that actually worked.
Our condition relapses and remits... every time I start to feel better after starting a new supplement does not automatically mean the supplement helped. It could just be I was 'due' for a remission... and the timing hit just so. I usually only count a supplement as helping, if I feel better on it, worsen while off of it, and feel better again when I go back on it. If I can't 'recreate' the benefit while on it, then I don't connect the use of it with the improvements.
And - I honestly think that the only reason they help me is DUE to unrelated things. I think the ME/CFS stands on it's own. But if I have nutritional deficiencies, food intolerances, etc as well? Then managing them at least lowers one of the things that makes me feel awful and I'll take anything I can get at this point... as much as I want a cure - I'm not finding one... until I do, I'm just managing as much as I can until then.
One of the things I get told by a certain health professional is how many people have been 'cured' by giving up sugar. I drink ONE (just ONE) Pepsi a day - it's the only caffeine I get. I don't drink coffee nor tea, nor do I want to. I drink more water than I used to... but I still drink my Pepsi. I have it on my list that if I've gone through everything else, maybe I might consider giving it up, but frankly? I'm not there yet and won't be there for a long while. When it comes right down to it? In my opinion? Pepsi doesn't cause ME/CFS. I'm sick and dropping my one-true-love beverage? Isn't going to cure me of anything. Is it more sugar/corn syrup/etc than I need? Probably. But I'm not obese, I don't drink it to obscene levels, and I'll probably have to resist punching the next person who tells me to give it up.
I think the 'oh, have you tried x' supplement suggestions probably mostly fall into that same kind of thing - as if it's a cure all... like the fad diets, etc. For me? I'm only trying the things that I can find connections between my symptoms and recommendations that I can find backed by studies. And if it doesn't help? It's tossed and I go onto something else after thorough research. I'm batting probably 1 out of 10 things that have held promise that actually worked.
SOC
Senior Member
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If there was a supplement or a diet that cured ME/CFS, we'd all know about it, be cured, and out living our lives.
That doesn't mean that certain supplements or diets can't improve the quality of life of some patients depending on their individual physiology. Those of us with strong autoimmune or allergic tendencies may benefit from autoimmune/allergy diets. Those of us with deficiencies for various reasons benefit from supplements to correct them. Inosine can improve NK cell function and so could benefit patients with poor NK cell function. And so on....
In other words, I don't think there's a one-size-fits-all supplement or supplement protocol for ME/CFS, nor is there a single diet plan. Supplements that improve my quality of life to some degree may not do anything for you. That doesn't mean that careful and intelligent use of supplements and diets isn't useful in ME/CFS. The trick is not to jump on every fad bandwagon. That can waste a lot of time, energy, and money none of us can afford.
That doesn't mean that certain supplements or diets can't improve the quality of life of some patients depending on their individual physiology. Those of us with strong autoimmune or allergic tendencies may benefit from autoimmune/allergy diets. Those of us with deficiencies for various reasons benefit from supplements to correct them. Inosine can improve NK cell function and so could benefit patients with poor NK cell function. And so on....
In other words, I don't think there's a one-size-fits-all supplement or supplement protocol for ME/CFS, nor is there a single diet plan. Supplements that improve my quality of life to some degree may not do anything for you. That doesn't mean that careful and intelligent use of supplements and diets isn't useful in ME/CFS. The trick is not to jump on every fad bandwagon. That can waste a lot of time, energy, and money none of us can afford.
amaru7
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That's what I'm afraid of, because that would mean that I'm disabled for life, which I still, after more than a century of chronic disease, find hard to accept. Supplements and diet changes gave me tiny short term improvements, but nothing earth shattering like a cure or anything.
I hope that doesn't go for the HGH I'm planing to soon try out. If at least it improves my QOL and my functionality. I'd consider it a success, if I'm able to get a career in my life and my social life back as a result. I know from past experience, and sorry if I'm off here, that it definitely does wonders for improving sexual function, which probably is related to general health and energy levels aswell.
Supplements when orchestrated properly helped quite a bit manage every one my conditions, until recently running into strange new issues for which they have little apparent effect. Even if they're not cures, anything that can prevent further brain damage or reverse it is worth it, provided no serious side effects. Some of them are known to have long-term effects.
My ultimate goal is achieving a higher rate of brain regeneration than degeneration. When you have no hope of finding the cause of the degeneration it's the next best thing.
My ultimate goal is achieving a higher rate of brain regeneration than degeneration. When you have no hope of finding the cause of the degeneration it's the next best thing.
Mary
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Like most everyone here, I've spent thousands of dollars over the years on nutritional supplements, and have found that a few out of all of them have helped me, and continue to help me:
methylfolate - markedly increased my energy roughly 5 years ago, and continues to do so. I'd taken a B complex faithfully for years and years with no apparent benefit, but when I started taking 1600 mcg. of methylfolate (together with methylcobalamin which I'd already been taking), it was great. So when you say you've taken "B vitamins", it's crucial to know exactly which B vitamins, and how much of each, you've been taking. If it's just a B complex, well, chances are it probably wouldn't do much.
B6 in the form of P-5-P - again, my B complex with B6 did nothing for me. When I started taking B6 in the form of P-5-P and got up to 125 mg. a day in divided doses, it made a noticeable improvement. The Bs are tricky!
Potassium - it all depends how much you're taking. I discovered after starting Freddd's protocol (http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/ ) that I was chronically deficient in potassium and now take 1000 mg. a day, plus often a glass of low-sodium V8 which has 900 mg. 100 or 200 mg. would have done nothing for me. So the dose is everything.
d-ribose helps a little, although it doesn't solve anything.
Also I recently started taking inosine - one 500 mg. capsule a day, and it's boosting my energy.
Also, I started branched chain amino acids and l-glutamine last November and they have helped a lot with PEM and increasing my endurance. However, after not crashing for 6 weeks (unheard of for me), I overdid it Saturday and was crashed yesterday. It was quite disappointing, so nothing is fixed really, but overall I definitely feel better than 5 years ago, and have more good days and recover more quickly from crashing.
But whatever is underlying everything, I don't know what it is and I'm sure if I stopped all these things I would quickly regress but for now they have improved my quality of life so have no plans to stop them.
jimells
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Well like everyone else I've made my fair share of expensive pee. Oh well.
Since I have a documented deficiency of B12 and D, it makes sense to me to supplement these. The POTS med I take depletes potassium; it would be foolish to ignore that. Magnesium seems to help with muscle spasms. Lately I've only had them when I run out of magnesium, so that's good enough evidence for me.
The supplement that seems to help the most is CoQ10, and there is actual research that suggests it can treat migraine, the bane of my existence. The literature suggests that up to 800 mg per day is safe and generally well tolerated. I am now taking about 500 mg most days and it has made a very big difference in my neurological symptoms and the severity of PEM crashes. My neuro symptoms include sensitivity to light & sound, inability to regulate body temp, extremely variable BP, insomnia, cognitive problems, etc. These symptoms have all improved; maybe they would have anyway.
Someone on the forum suggested buying CoQ10 in bulk form here. So far they have been reliable suppliers.
Supplements have not 'cured' anything, but they seem to lessen my daily pain and suffering. For that I am grateful.
Since I have a documented deficiency of B12 and D, it makes sense to me to supplement these. The POTS med I take depletes potassium; it would be foolish to ignore that. Magnesium seems to help with muscle spasms. Lately I've only had them when I run out of magnesium, so that's good enough evidence for me.
The supplement that seems to help the most is CoQ10, and there is actual research that suggests it can treat migraine, the bane of my existence. The literature suggests that up to 800 mg per day is safe and generally well tolerated. I am now taking about 500 mg most days and it has made a very big difference in my neurological symptoms and the severity of PEM crashes. My neuro symptoms include sensitivity to light & sound, inability to regulate body temp, extremely variable BP, insomnia, cognitive problems, etc. These symptoms have all improved; maybe they would have anyway.
Someone on the forum suggested buying CoQ10 in bulk form here. So far they have been reliable suppliers.
Supplements have not 'cured' anything, but they seem to lessen my daily pain and suffering. For that I am grateful.