Supplements do not have any real effect on symptoms

[caledonia]

lol - I'm sure we all have this thing which I call the "cabinet of lost supplements" - stuff you've tried which didn't do anything or made you feel worse.

That being said, once I found some core supplements which address root causes, I was able to discontinue many other what I call "band-aid" supplements, such as supps for sleep or anxiety. I've also been able to get off Armour Thyroid and I'm currently tapering off Zoloft.

Current supps:
sublingual methylcobalamin + adenosylcobalamin (B12)
potassium
magnesium
vitamin D3
Holistic Health All In One multi (methylfolate + other methylation supps and co-factors)
Pic-mins (various minerals)
fish oil (very high quality)
probiotics (lacto, bifido and sacc B)
Dr. Wilson's Adrenal Rebuilder

Looking back, I think a good way to determine what you need is to do the Nutreval test, then interpret it with the compilation of Rich Vank's interpretations that I wrote up + the interpretation it comes with. Supplement with everything you're low in.

The other thing is to look at what toxins and infections you can eliminate which may be perpetuating your disease. So you may temporarily need extra supps for doing the 4R Gut Rebuilding program or chelating mercury, for example. Once you take care of those, you may be able to eliminate other supplements that were a band-aid for symptoms caused by the infections and toxins.

I also use self muscle testing extensively to determine if I should still be taking something. For example, as I was working through methylation treatment, I went through a period where I needed mito supps, but now I don't need them any more.

 

[ahmo]

I have been incredibly fortunate. I floundered and flailed and spiralled downward for 8.5 years, trying things from Teitelbaum, Cheney, Myhill, Rich VanK protocols. I stumbled upon a reference to Gut and Psychology Syndrome. This described the hell I was inhabiting. Within days of eliminating gluten, life became tolerable. Six months later I found that I needed to eliminate histamine and sulfur foods, which meant most of my diet.

Also at 6 months on GAPS I learned about Pyroluria. Adding a handful of correct supps changed my life, my mental landscape. Five months further, I learned about MTHFR and my other snps. I forced my brain to assimilate Freddd's Protocol. B12, folate, and the associated Deadlock Quartet supps again changed my life, resolved all the neurological issues. Low dose naltrexone, which controls inflammation, boosted my stamina, unquestionably. Anti fungal/bacterial/parasite protocol, along with protyolytic enzymes, created deep shifts, allowing me to resume foods I'd eliminated for autoimmune reasons. A handfull of different things were effective in managing my ammonia, peroxynitrite, and histamine symptoms.

And then, amazingly, I followed the advice of another fellow traveler on pr, and tried a little something called FMN, a coenzymated form of B2. This was about 4 weeks ago. This little supp, referenced in the context of MAO-A snps, has eliminated my need for all the antioxidants and antihistamines I'd been relying on. I'm now back to basics. I'm also eating fermented food and garlic, after nearly 3 years.

Supplements haven't cured me. They've delivered me a quality of life worth living. I've been, as I said, fortunate, in that since I stumbled onto the right path, each step since then has taken me forward. There have still been supps that didn't work for me. No omelettes without breaking eggs. Each step forward reduced the noxious symptoms that made my life unbearable, intolerable. Each step increased my resilience. And I am also forced to recognize an absolute low ceiling to my energy. Nothing has restored my cognitive and physical capacity. That's an adjustment I live with.

 

[Mogwai]

I can't sleep without my magnesium malate.

B12 also helps, and always has.

I've had a few good flings with some other supplements, but the love affair has always ended rather abruptly. Trying to rekindle the love we once had always ends up in tears...

Still, I will continue to try things here and there. I'm all about the choline right now...

 

[msf]

I think there is a possibly a bit of confusion/imprecision here - I'm not sure if the original poster was suggesting that none of the supplements that have decent evidence supporting a theoretical benefit in ME patients work, or just that most of the supplements they have tried haven't worked. If it is the latter, that would be very unsurprising - how many supplements would have a noticeable effect on a chronic infectious disease, or an autoimmune condition? I have found that some of the former supplements have had an effect, particularly B12 - I am not sure about Omega 3 as I started increasing my intake of this as soon as I fell ill. I also noticed little effect from CoQ10, and a possible allergic reaction to L Carnitine, but whether this is because I am not deficient in these, or the supplements are not very bioavailable, or because these do not affect the core of the disease, I can not say. As for the brief love affairs mentioned above, could this simply be a case of successfully correcting a deficiency? Once you are no longer deficient in something it is unlikely to have a significant effect on your health, by definition.

 

[JaimeS]

I have been incredibly fortunate.

It sounds like you've worked your a$$ off, actually.

That said, I feel the same glow of good fortune as you do. I know that the choices I've made are due to long research hours and beating my head against a wall, but I'm all too aware of the people who have 'tried everything' or have 'done everything right' and somehow continue to slide ever downward and I know that fortune, luck, whatever you want to call it, has played a huge role in the life I'm able to live today.

I know what you mean about the coenzymated B vitamins! I've just started them and they turn my whole mouth yellow (ewwww) but I would take them if they gave me purple spots. That plus upped CoQ10 has reduced my need for other supplements.

-J

 

[Mij]

I take coenzymated B's as well, mine has B2 in the riboflavin 5’ phosphate. Is there a b complex with the B2 FMN form? sounds interesting.

 

[Rich D]

I think this is an interesting topic, if we all can just take a breather and not get too defensive. All of us are struggling here, with our own situations and experiences, so I would just make a plea for everyone to keep that in mind. Our disease presents a very difficult and complex set of problems to deal with, and the purpose of this site is to share our experiences for the benefit of ourselves and others.

That being said, I think @leokitten has an important perspective that needs to be brought up. I have had a similar experience where I've tried almost every supplement mentioned in the forums. None of them has helped a bit as far as I can tell. I thought there was something wrong with me, or that I was unusual, so it helps to understand that there are a lot of people in this situation. When you try a supplement, especially when you are new to this disease, you may have very high hopes that get dashed over and over again. I think it is valuable to temper your expectations, which I learned the hard way. Perhaps some people reading this discussion can be helped by hearing this.

The lack of success may be because people like us are in the middle of the scale in terms of severity, or that we are too active for our own good, but I'm not so sure that is the main reason. Even if too much activity is partly responsible, that is valuable information to consider as well.

Thanks, everyone, for chiming in!

 

[Mij]

During the first 6yrs of illness when I was very ill I didn't take one supplement- I went from bedbound to 80-90%. So there you go. I had a relapse from taking immnue modulators. I started taking supplements only after because I developed mineral deficiencies and mito inefficiencies. My CoQ10 levels was tested 13yrs ago, it was not optimal but not too low either. I was advised to take 100mg/day C0Q10 so I did on and off, it wasn't until I increased the dose to 200/mg every day that I felt a difference. I may try to go up to 300mg/day but have to be careful because it disrupts my sleep.

 

[JaimeS]

@Mij - the thing about sleep is interesting. CoQ10 may be one of those things I really need, because I get absolutely no jitteriness from it whatsoever, but I have heard the same elsewhere (maybe from you; it's hard to keep track of these things).

I looked for FMN itself, but couldn't get ahold of it in my local store. I'll bet it's possible to find online, however.

-J

 

[Mij]

@JaimeS do you know if Riboflavin 5-phosphate is the same as FMN?

 

[alex3619]

Most supplements do not work for me ... here I am forced to use my own experience, I cannot expand that to claims about other people.

I have my lemon rule for a reason, rule 22:

22. Most treatments for ME are lemons, they don't suit everyone - but you often wont know if it suits you until you suck it and see. If you see a soured look on my face you will know why.

http://forums.phoenixrising.me/index.php?entries/28-rules-of-thumb.941/

Some supplements have had noticeable and variable effect. Others I just have to guess about. Some have worked so well the effect is dramatic.

The problem with testing for deficiencies is that, while indicative, the deficiency model is itself a deficient model. The biochemistry is a complex dynamic, subject to a myriad of factors, many of which we cannot test for or don't even know exist. Simply filling a deficiency need might not do anything, it might even make things worse depending on feedback effects. So things change. You are always shooting at where a hypothetical bumble bee used to be a good while back. Its unlikely its still there.

I only take supplements that actively help. At the moment that would be two, though one is not available as its no longer made. That leaves Resveratrol. Its my non-lemon. That does not mean its your non-lemon. It also does not do much for my ME symptoms but helps with my wheat intolerance and breathing issues ... which may or may not be part of ME.

 

[JaimeS]

@JaimeS do you know if Riboflavin 5-phosphate is the same as FMN?

Yes, it is. Mine is FMN, too, because I DID order it online.

Obviously it hasn't entirely cured the brain fog....

-J

 

[JaimeS]

Most treatments for ME are lemons, they don't suit everyone - but you often wont know if it suits you until you suck it and see. If you see a soured look on my face you will know why.

Love this, @alex3619

 

[ahmo]

It sounds like you've worked your a$$ off, actually.

I take coenzymated B's as well, mine has B2 in the riboflavin 5’ phosphate. Is there a b complex with the B2 FMN form? sounds interesting.

I've been taking Swanson's activated B complex, which includes 25 mg R5P, for nearly 2 years. It didn't give me this benefit. I also tried adding additional R5P earlier in the year, 50mg, which resulted in my poisoning myself with ammonia or peroxynitrite, took several days to rid my system. The FMN has had a totally different effect. I haven't gone searching for research and understanding, as I took the advice of @ppodhajski in adding this supp. But I'm pasting below the few references I have.

http://forums.phoenixrising.me/inde...-histrelief-histame-daosin.10565/#post-186493
Rich VanK...links 2 research papers I’m guessing that you are referring to FMN. (There are two active coenzyme forms of vitamin B2, i.e. FMN and FAD. FAD is not available as a supplement in the U.S., but it is available in Japan as a prescription, and I think it’s also available in Scandanavia and in Russia.)

In rats (see below) and presumably also in humans, both the active forms of riboflavin are dephosphorylated in the gut before absorption, so if there is a deficiency in flavokinase, it would be a good idea to take sublingual FMN. If there is a deficiency in FAD synthetase (I have encountered one person with this, but it is pretty rare, I think) then prescription sublingual FAD would be the way to go.

http://forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209/page-7#post-247316 B2 I Love you #125

How riboflavin actually gets into cells is not fully understood. For example, this paper from 2005 mentions:

Riboflavin transport proteins operating in the plasma membrane thus have an important role in the absorption of the vitamin. However, their sequences remained elusive, and not a single eukaryotic riboflavin transporter is known to date.
(and then it goes on to describe a newly discovered transporter that likely exists in humans)

http://www.jbc.org/content/280/48/39809.long
Also considering that only FAD gets past the blood brain barrier, I think these allow the possibility that sublingual FMN is more effective than oral riboflavin through means that aren’t understood yet.


http://forums.phoenixrising.me/inde...lation-protocol-srmp.36344/page-2#post-586710
This talk of methylation and MAO is confusing to me. The only methyl that helps break down biogenic amines is SAMe and that helps the COMT enzyme, not the MAO enzyme.

But why take B2 when you can take flavin mononucliotide (FMN) as a sublingual? That is all I take for my MAO, plus magnesium for my COMT. I also stopped taking B12 in any form and my levels are normal after being very high for so long. I think all those sups you have listed are a waste.

Also, a low amine diet helps but I find I can eat more amines as long as I take more FMN. And it also took me, and one of my friends only one day to feel the effects from FMN.

My disabling anxiety and neuropathy (among other things) are all gone.

...But I also take FMN (B2) which helps lower catecholamines by fixing my MAOA and MAOB SNPs. And I am also on a low amine diet

I found the sublingual FMN works much faster, like 15 minutes, when I was having epinephrine provoked anxiety.

http://forums.phoenixrising.me/index.php?threads/is-taking-bh4-a-problem-for-comt.36997/#post-588606

FMN = flavin mononucleotide = riboflavin 5 phosphate = coenzymated B2

Riboflavin is a cofactor for the MAOA and MOAB enzymes. Well, actually FAD is the cofactor, but riboflavin turns into flavin mononucleotide (FMN) and then into flavin adenine dinucleotide (FAD).

By taking FMN we are only one step away from FAD and we save some ATP in the process.

For the full riboflavin pathway see:

http://smpdb.ca/view/SMP00070

For people with CFS and have low ATP so this is important.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/

Why does this help you relax and lessen your stiffness? I don’t know exactly, but I am guessing that it reduces oxidative stress by changing how catecholamines are broken down in the body. If you want to read a long paper on the process see:

http://intl.pharmrev.org/content/56/3/331.full.pdf+html

Basically, by speeding up MAO we remove O2 from the cell and create H2O2. Removing O2 from the cell lowers the chances of creating superoxides forming in the cell. (Superoxides are created when and electron is added to O2) Hydrogen peroxide is not as bad as superoxides.

(COMT helps reduce catecholamines but to a lesser extent and in different area in the body. It had more to do with lipid catecholamines)

Since SOD turns superoxides into hydrogen peroxides and SOD SNP will keep even more superoxides around. And then bad GPX SNPs will have a hard time getting rid of the hydrogen peroxide.

 

[alex3619]

Here is another thought on supplements, one which I have been playing with for years. In fact I started thinking about this kind of thing in 1993, another story I have discussed in several threads.

Our illness can be thought of as a stable biochemical state, whatever it actually is or may be driving it. What supplements can do, if its the right one at the right time and the right dosage, is kick that stable state. It might kick it hard enough to change the state, and hence change the symptoms (though not always for the better).

If the stability of the state comes from its own internal reinforcement you might nudge it into a new permanent stable state. However if there is an external driving force then it will slowly drift back into something resembling the old state. The supplement "stopped working". Whereas, under this model, what really happened is the body pushed back. The supplement is still working but since it was only for a peripheral issue its not enough for permanent change.

This kind of thing is covered by chaos and systems theory.

 

[Scarecrow]

Our illness can be thought of as a stable biochemical state, whatever it actually is or may be driving it. What supplements can do, if its the right one at the right time and the right dosage, is kick that stable state. It might kick it hard enough to change the state, and hence change the symptoms (though not always for the better).

I remember seeing a presentation from Gordon Broderick laying out a similar idea. The closest I can find just know is this blog by Cort.

Looks like you were there well before him!

 

[Hip]

I found supplements made a profound improvement, and in fact more-or-less eliminate, my severe anxiety disorder. Anxiety is a common comorbidity in ME/CFS. The supplements that did the trick are listed in this thread: Completely eliminated my severe anxiety symptoms with three supplements! About 50% of people who tried these supplements reported they got very good results also for anxiety.

In terms of ME/CFS, I personally found a highish dose of selenium makes noticeable improvements to my fatigue and brain fog. Enough improvement for me to keep taking selenium on a daily basis, which I have done now for a few years. When I stop I quickly get worse. More info on this thread: High Dose Selenium Significantly Improves My Fatigue and Brain Fog. Note though that most other people who tried selenium said they experienced an overstimulation effect, and so discontinued; though a few reported that they got similar benefits to me.

 

[alex3619]

I remember seeing a presentation from Gordon Broderick laying out a similar idea. The closest I can find just know is this blog by Cort.

Looks like you were there well before him!

Actually I was following the work of Dr Andriya Martinovic, though I was working on complex dynamic systems for my PhD candidacy, as applied to artificial neural networks. He was my CFS doc. Back then nobody talked about ME.

 

[ahmo]

I came back here to post an addendum to my supplement history post. And I see 2 things which speak to that.

If the stability of the state comes from its own internal reinforcement you might nudge it into a new permanent stable state. However if there is an external driving force then it will slowly drift back into something resembling the old state. The supplement "stopped working". Whereas, under this model, what really happened is the body pushed back. The supplement is still working but since it was only for a peripheral issue its not enough for permanent change.

In terms of ME/CFS, I personally found a highish dose of selenium makes noticeable improvements to my fatigue and brain fog. Enough improvement for me to keep taking selenium on a daily basis, which I have done now for a few years.

The thing that's happened for me with my supplementation, is that my body has finally aligned into normality. From infancy my body was assaulted by gluten, casein, inadequate thyroid replacement. I doubt that my B12/folate deficiency began with the onset of ME. I know the symptoms of pyroluria go back forever. Additionally, detoxxing has released the toxins, enabling zinc to fill the receptors it belongs in, which had been occupied by the nasties.

I'm no longer needing high doses of minerals, no longer taking any K+ at all!! Nor manganese. Presumably my high carrot intake is meeting these needs. I've lowered my molybdenum from a high of 6x 150mcg tabs twice daily, to 3x 150mcg 2x/day. Zinc and selenium are now only 50mg, 200mcg daily, Mg continues at a stable 600mg AM/PM.

I'd taken a range of vitamins, minerals, aminos for some years. The problem was, they were the wrong type. I used high dose B6 for years. P5P form of B6, however, had an impact by Day 5 that altered my mental landscape. I took carnitine, but not the right form. Wrong forms of folate, B12. Never knew about FMN form of B2. Wrong form of thyroid. As well, high sulfur supps that were harmful. So, as the saying goes, close, but no cigar. Close was not enough to correct my overly reactive nervous system before ME. And post-ME, I've thrown all manner of things at it, a lot of which helped.

But now there's been some foundational shift, making my body feel like the person I always thought I should be. Instead of the tension and pressure within my core, there's a relaxation, a calm. I sought this space with all manner of practice and therapy, unsuccessfully. So it's true for me that supplementation has not only saved my life, but given me a quality of life that, at the core of my physicality, is better than I have ever had.

 

[waiting]

@ahmo, that's amazing -- I'm glad to hear of your success. How did you figure out that you were taking the wrong types of supplements, enabling you to correct the problem & get the intended benefit?