Trying Again. What First? D-Ribose? BCAA's?

Squeezy

Squeezy

Senior Member (Voting Rights)
I'm in a crash, and as always when in a crash, after the initial "Lying Here Like I'm Dead Stage", instead of completely and totally resting like I should, my DESPERATE brain claws at hope. Which means painful internet searching. :facepalm::arghh::banghead:

Anyone else this daft???

Where do I start?

I already take a basic set of supplements recommended by the Thyroid Patient Advocacy organisation, which seems very sound, and is similar to Dr Myhill's basic.

I'm a sugar monster, so I reckon first up is D-Ribose powder to mix into water to replace my addiction to sugary drinks.

CoQ10 made me feel ill. I took Ubiquinol. A good brand. Might leave that for now.

NAC? @Invisible Woman did you not try it recently? How'd it go?

Acetyl L Carnitine - I don't eat red meat, so is this a good thing to try?

Phosphatitidylserine - sounds relevant.

Americans talk about:

BCAA's - Branched Chain Amino Acids?
Cetrulline

Oh no! :confused: I started to read a thread where they talked about LOTS of supplements: mega dosing after getting muscle testing by a chiropractor and finding eg: you need 10,000 mg B12 a day, needing 4 times the dose of BCAA's... others trying it without medical guidance!

My brain is fried. How do sick people read all this and manage their health alone? I can't afford it. But can I afford NOT to try?

Overwhelmed. Defeated. It's beyond me.
 
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Every time!

Most supplements do nothing for me. BCAAs are helpful when I need to do stuff that are guaranteed to result in PEM, but I would not bother if you don’t already have it on hand. It’s expensive and won’t make a big difference on your crash probably. It only helps me if I take right before/after the activity and even then not enough to matter if I do so much I crash.
 
Squeezy said:
They take all manner of supplements I'd never heard of. Often - not always - prescribed by actual ME doctors - based on testing for what they might actually be missing, instead of shooting in the dark. Like we do.
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It's all a shot in the dark, even coming from "ME doctors". The underlying issues/cause is not known. I take supplements to replenish deficiencies.

I had a whole panel of expensive tests done years ago and took expensive 'custom formulas' that did nothing.
 
Oh, thank you for replying everyone! :inlove: You are much-needed shots of sanity right now. Hugs of gratitude! :hug:

It's Mary, who talked of the muscle testing. Sounds like quakery to me too!

She is firm that mega dosing helps her, where normal doses failed. Others agree. I've not tried ME specific supplements for probably 8 years of my 11 years ill. Too jaded. But what if...?
Oh, hope is SO CRUEL :cry:

@andypants You also hunt for answers when crashed? :banghead::hug:The fools we are!

See, now I'm thinking, "Ah, supplements don't help you, but maybe a higher dose?" Oh, but how do people even DO that? I feel queasy enough taking just a few things!

Maybe I'll get some BCAA's to try. I'm currently crashed because I went out to family lunches 2 days in a row. Which I loved - time with my little nephews. :party: But then I had no reserves for BOTH my teenagers having crises on the SAME day. :arghh:

If it could fortify me, it would be worth the expense!
 
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Squeezy said:
My brain is fried. How do sick people read all this and manage their health alone? I can't afford it. But can I afford NOT to try?
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Yes, you can afford not to try because all that stuff about targeted supplementation is almost certainly nonsense. There are no ME doctors who know which supplements to recommend for ME. Any doctor who does is a phoney. I personally think it is very unlikely that any supplements are relevant, unless you have a risk of low vitamin D from never going outside.

One of the great things about this forum is that it is not a phoney medicine swap shop like a lot of others. I don't have any answers but the way to save money and optimise health is to steer clear of all this stuff I think.
 
Squeezy said:
@Arnie Pye excellent reminder to get my salivary cortisol tested now I FINALLY can! I already miss the health system abroad, sorry NHS, but you're a bit scary. But at least private testing is available here! Hooray!
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I've seen this test recommended elsewhere (Thyroid UK on HealthUnlocked) : http://regeneruslabs.com/shop/product/adrenal-function-hor05-606

It includes a DHEA test which many other companies don't include with saliva cortisol testing, and they don't use reference ranges of the "less than or equal to 1.5" type which are so unhelpful.
 
Sorry to hear you're struggling @Squeezy :hug:.

Nope, I didn't try the NAC in the end - contraindicated for hypothyroidism. Even though I take my replacement T4, it's just not worth b*ggering up my thyroid hormone balance.

I have added in BCAA. I have found they take the sharpest edge of PEM muscle pain, but as @andypants said you need to take em right before, right after, or during the activity. Unless you're taking them every day. Don't take with food either.

I was fortunate to have some professional help with this kind of stuff years ago. I learned that there are lots of people out there who like to sell lots of stuff based on very little evidence, that you can actually cause deficiencies by taking supplements you don't need - especially mega dosing.

Sadly, there are no short cuts. Rest. Pacing. Remember you've just had a massive upheaval of moving house and country. That will have taken a toll and may even mean it takes you longer to recover from something you could have handled before.

If you have signed up with a UK GP, then it might be worth seeing if you could get a couple of tests done - thyroid function, full blood count etc. At least make sure your thyroid function is okay (well within what the NHS will do for you). I find I need slightly more T4 in winter and slightly less in summer, so it may be that moving from a much warmer climate may affect this. No harm to see how your iron levels are either.

You mention sugary drinks. Are they carbonated?

I hope things improve for you soon.
 
Honestly, I don't think blindly taking loads of supplements helps, and it may ruin your bank balance. There's too much conflicting advice and next to no convincing evidence.

My doctor suggested a good multivitamin and extra vitamin D3 (my whole family is deficient in this). That's it. Anything else probably isn't useful unless you have a specific need for it.

For example, I had lower than 15% of the reference ranges in a bunch of things, so I started on NADH (B3), vitamin K2 and a couple of other things to address that. The NADH seems to give me a bit of a boost late in the afternoon if I need it (moreso than B12). It's not a huge difference, though.

I also had really low zinc, so I added extra into my regime. I couldn't say if that helped or not. I took a double dose for three months, and now I'm back to my usual multivitamin.

There were a couple of other things I needed to increase, but I chose to focus on only a couple at the time to ease the financial burden. Plus, too many supplements at once upsets my tummy. That makes me think they won't get digested anyway.

The other thing is: I've been taking multivitamins for years and still had deficiencies, so I'm not convinced mega dosing even the things you need is necessarily that helpful.

We may not absorb what we need as readily from a densely packed pill as we would from food. I was low in malic acid, but that's prevalent in apples, which I love, so I just eat more of those now. I think that's a cheaper and wiser approach, and if I could write a letter to my newly diagnosed self, I'd probably mention that and save myself lots of money.

In short, you can probably cope with a good multivitamin and extra D3 and that should be enough. Eat widely if you have other issues, and only consider supplementation if you're really low on anything. Don't bother with the faddy supplements.
 
Supplements improve how I feel. I feel like I’m powered by d-ribose (3 teaspoons spread out over the day). I’m prepared to accept this could be entirely placebo, but I need the placebo to get through the day! And placebo can help a bit even if you know it’s placebo https://www.health.harvard.edu/blog/placebo-can-work-even-know-placebo-201607079926

Basically copying what I’ve previously written to someone else (she has mental health issues and ME):

Rhodiola- is good for stress/cognition/fatigue/depression see evaluation of evidence here https://examine.com/supplements/rhodiola-rosea/ (examine takes a neutral approach to evaluating the scientific evidence for supplements)
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Eg affordable, UK quality tested: Amazon product ASIN B07F3XGCCT
Multivitamin- a good multivitamin can help physical health and mood, though sometimes it can harm too if the proportions are wrong for you. Eg LEF 2 a day (I was taking just one a day) has something in it which seemed to trigger depressive symptoms in me. Within two days of stopping it I was back to normal mood. Nothing had changed in my circumstances. I later also came across other people who say the same about that particular one, so although it could be something else I do think it was that. It gets really complicated when you start to look into the pros and cons of various versions of vitamins (folic acid versus methylfolate etc) and optimum %.

Floradix is good for a gentle, general boost (Together Health WholeVits Woman's Multivitamin is a similar thing I’m thinking of buying). If you want a potent boost Fast and Be Clear has a lot in it expected to help fatigue symptoms and general health (one tub might be enough, it’s not something to take continuously). Also it’s powder you mix with water, so you can have less to reduce % of vitamins and make it last longer.

Fast and Be Clear ingredients
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Nac - it’s an anti oxidant and seems to be good for switching to a rest and relax state. At least the first time, it’s best to take in the evening as it might make you very sleepy. People with ME tend to take it to switch out of the tired-but-wired too tired to rest state, but it is also used for other things as wide ranging as anxiety, paracetamol overdose and catarrh. I find nac very useful to have though I only take it occasionally.
I have Amazon product ASIN B018W1AHV0
 
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Thank you @Arnie Pye! That's so helpful! My DHEA has been low - Invisibly so - on blood tests, so I definitely want to test that too.

Jonathan Edwards said:
Yes, you can afford not to try because all that stuff about targeted supplementation is almost certainly nonsense. There are no ME doctors who know which supplements to recommend for ME. Any doctor who does is a phoney. I personally think it is very unlikely that any supplements are relevant, unless you have a risk of low vitamin D from never going outside.

One of the great things about this forum is that it is not a phoney medicine swap shop like a lot of others. I don't have any answers but the way to save money and optimise health is to steer clear of all this stuff I think.
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Yes, it's very restful here, from that point of view! BUT do you think these doctors who test for deficiencies, and then prescribe, (in addition to Valcyte etc), the kind of supplements I've talked about above, are basing their advice on unreliable tests?

Are their tests worthless junk? And, is restoring a person's nutritional status to "Optimal" not helpful when treating this disease which has no treatment?

I take a range of daily vitamins and minerals because I 100% know from my poor dietary intake that I'm deficient in most things. I can only eat bland things, and not a lot of them.

So I have to ask myself - what about these amino acids? I'm not talking about "targeted supplementation" really. More about what building blocks of health an ill person with a restricted diet is missing.

Because we ARE what we eat. And if we can't eat well... we aren't well.
 
From my experience as an ME patient, many of the patients I know do take a hit and miss approach to supplements. I'd bet good money that many of the "experts" they have seen prescribe pretty much the same supplements to everyone who comes in with a specific diagnosis.

One of the problems we face is what's normal for you? None of us really know. All we can look at is the assumed generic "normal".

There is a danger in taking advice that the recommendation may be coming from someone who doesn't know that they have a specific issue and so this supplement works well for them. You might have a different issue that means the same supplement that turned their life around might make you rather unwell.

I winder if there is a specific patient group with your digestive problems @Squeezy who might be able to provide more specific dietary and supplement advice? ME patients can vary so widely, presumably they might be able to provide more targeted recommendations.
 
Invisible Woman said:
someone who doesn't know that they have a specific issue and so this supplement works well for them
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Yes I think this is a very real issue. Though of course we don’t know if we do have the same issue they have! In my case d-ribose might be effective due to mitochondrial mutations (and mito cocktail supplements in general might help me more than some people here).

I think a bigger issue is acknowledging that something hasn’t worked and stop buying it before you throw loads of money at it. I used to use ME/CFS assistant app or Mendus to record symptoms when starting a new supplement. Neither of those are up and running at the moment though.

If a supplement doesn’t cause harm and isn’t expensive it could be worth trying. Supplements aren’t necessarily all woohoo nonsense, and some have double blinded trials to back them up, it’s just substances you don’t need a prescription to buy.
 
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Squeezy said:
Oh no! :confused: I popped back over to PR and started to read a thread where they talked about LOTS of supplements: mega dosing after getting muscle testing by a chiropractor and finding eg: you need 10,000 mg B12 a day, needing 4 times the dose of BCAA's... others trying it without medical guidance!

My brain is fried. How do sick people read all this and manage their health alone? I can't afford it. But can I afford NOT to try?

Overwhelmed. Defeated. This is why I left PR. It's beyond me.
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As far as I know there's no evidence that the muscle testing technique used by some alternative health practitioners is anything but nonsense and a way to sell lots of supplements etc. I have no idea whether there's been any kind of double blind trial of it.

Jenny TipsforME said:
If a supplement doesn’t cause harm and isn’t expensive it could be worth trying. Supplements aren’t necessarily all woohoo nonsense, and some have double blinded trials to back them up, it’s just substances you don’t need a prescription to buy.

It feels a bit like since the split with PR it’s hard to take a moderate position like this. If I go over there I don’t see many opinions I trust, but here it often feels like Science is put on too high a pedestal as the only arbiter of knowledge :(
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It's absolutely fine here for members to share their personal experiences, good and bad, of using supplements or medicines.

It's also absolutely fine, in fact encouraged, to point out if there is a lack of scientific evidence that a particular substance is effective or helpful for people with ME in general. That's not denying an individual's experience in any way, but is a responsible thing to do for the sake of other readers to warn them that what works for one person may not work for everyone and may indeed cause harm.

The big problem comes if anyone says 'this worked for me so it will work for you' or even worse 'if you're not trying this you don't want to get better'. I'm not suggesting you would do that.

I am personally very wary of saying something works for me because I have no idea whether the effects I feel from using it are either placebo effects, or, even worse, doing some harm in some way I'm unaware of.

For example if I take a supplement, particularly in large doses over a long period, it may cause a biochemical imbalance that may be harmful.

Or if it's a drug it may be great for relieving a symptom but cause long term damage I'm completely unaware of until too late. And just because we can buy it over the counter without a prescription, doesn't mean it's safe.
 
Squeezy said:
Yes, it's very restful here, from that point of view! BUT do you think these doctors who test for deficiencies, and then prescribe, (in addition to Valcyte etc), the kind of supplements I've talked about above, are basing their advice on unreliable tests?

Are their tests worthless junk? And, is restoring a person's nutritional status to "Optimal" not helpful when treating this disease which has no treatment?
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I don't know what these doctors actually test for but there is no evidence that any supplements are actually helpful for ME. I very much doubt that any tests relating to the supplements you mention (things like D-ribose and acetyl l-carnitine) tell us anything useful. There is a huge bogus industry on these things. So yes, I think the tests are worthless junk. The idea of restoring nutritional status to optimal is junk. Human beings are designed to be very healthy with a very wide range of different diets. In general everything we need is present in excess. We also have no reason to think ME causes any particular deficiencies so there is no particular reason why an 'ME physician' should be a suitable person to advise on supplements - when they have nothing to do with the illness.
 
I agree the whole supplement thing is a fine line that's hard to judge @Jenny TipsforME.

I know that I do have some specific deficiencies, because I got very lucky and managed to see someone who was qualified and experienced. They worked mainly for the NHS though the NHS wouldn't pay for my treatment.

I am not against taking supplements per se, I still take them myself, but I am wary of a scatter gun approach. Your suggestion of noting symptoms seems very sensible.

I think the drawbacks include some people can become evangelical and unintentionally mislead others, there isn't necessarily any scientific evidence (which doesn't mean it can't help either), but also some supplement manufacturers make misleading claims about the very content of their products let alone the alleged health benefits.

In addition there are practitioners (by no means all) who use labs without checking them out. My advisor used to periodically and at their own expense send two blood tests from the same patient under different details to see if the results came back the same. Some labs are simply not accurate.

For me, it's a case of of proceed with caution and bear in mind that whether it's food, medication or supplement what helps one person can harm another.
 
Jonathan Edwards said:
I don't know what these doctors actually test for but there is no evidence that any supplements are actually helpful for ME. I very much doubt that any tests relating to the supplements you mention (things like D-ribose and acetyl l-carnitine) tell us anything useful. There is a huge bogus industry on these things. So yes, I think the tests are worthless junk. The idea of restoring nutritional status to optimal is junk. Human beings are designed to be very healthy with a very wide range of different diets. In general everything we need is present in excess. We also have no reason to think ME causes any particular deficiencies so there is no particular reason why an 'ME physician' should be a suitable person to advise on supplements - when they have nothing to do with the illness.
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If you think those supplements are junk, you may wish to discuss with two of the doctors in the UK who see / treat ME patients, Dr Weir and Dr Bansal, as I believe both have recommended such supplements to patients. My opinion is neither here nor there and I don’t take any of these things, but just thought I’d mention.
 
I recently read that Dr Bansal recommended patients use B12 patches and gave Vie patches a go, which have B vits and D3 too and do think they have helped. Anecdotal, but have been doing a bit better & think they helped me shift an summer virus, when previous one have hit me hard & long.
 
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