Sensitivity to supplements

[Kitsune]

I never had problems with being sensitive/overreactive to anything until I developed CFS 11 years ago. Now it seems like every time I research something that sounds like it might help me, my body rejects it! I wonder why, and what I might be able to do in order to better tolerate things that would be good for me.

Just a quick bit of info. I'm on the Paleolithic diet and doing well; it suits me. Since I started that and stuck to it 3 months ago, my reactiveness to various foods has disappeared. (At first I couldn't even have the odd 'treat' of something sugary or bready because it would make all my symptoms worse, but now it's not a problem.) That's the good news, anyway.

I supplement with the following: Vitamin C (18g a day - my main supplement), Vitamin D3, Vitamin B complex, krill oil, magnesium (citrate), ginko biloba, ashwagandha, Himalayan sea salt, psyllium husk. This is a tried-and-tested regime I developed over a number of years, a core of things that really help me. I've tried lots and lots of other things that either had no effect, made me feel worse, or that worked for me once but no longer do. Some examples: B12 (oral methylcobalamin), zinc, chromium, vitamin E (mixed tocopherols), Garden of Life multi, liquorice root, colloidal silver, colloidal minerals, adrenal glandular supplement . . . and on and on.

Lately I have tried very hard to take olive leaf extract and Lauricidin (monolaurin) but could not tolerate the smallest amount. Well actually, I can't seem to win with the Lauricidin at the moment, because it's clearly giving me something I need, despite that fact that even one grain overstimulates my system and makes some other symptoms worse. When I stop taking it, I feel worse still. I can only hope my body will get used to it gradually, but it doesn't seem to be happening so far.

I started looking into the possibility of methylation problems, since I also am now alcohol intolerant. But when I took one dose of milk thistle, I felt bowled over and got heart palpitations.

I don't believe my reactivity to these supplements is a herx; that seems to be the immediate go-to explanation when the body has difficulty with a supplement, but my symptoms don't match those of a herx, they stay the same rather than fluctuating, and they don't go away. When I was seeing a herbalist several years ago I did some detoxing under her instructions as well, which involved parasite and candida cleanses and a liver flush, and I felt no different, which would suggest that if my ability to detox is compromised, it's perhaps not too bad - but then, who knows?

It's frustrating when I can't take things that I believe would help me to feel better. Does anyone know of an avenue I might explore, or is this simply something I will have to deal with/work around?

 

[Mary]

@Kitsune - muscle testing done by a competent chiropractor has helped me with several issues, including alcohol intolerance due to my liver being overloaded with toxins. He helped me do a liver detox - it was kind of rough, I stuck it out for a month but afterwards my digestion was so much better, and, I was able to have a couple of glasses of wine without feeling like I'd been seriously poisoned for a couple of days.

Milk thistle has some detoxing properties as well as supporting the liver, so toxic overload may be an issue for you, or maybe not of course.

I've never had trouble with adrenal glandulars or methyl B12 or zinc or several of the things you can't tolerate, so I hope someone else will weigh in here.

The chiro did help me a lot with getting my digestion sorted out, as well as my adrenals. Over the years I've learned how to do my own variation of muscle testing but will go to him to see what results he gets, and almost invariably it comes out the same as mine. I use muscle testing to see what supplements are helpful or hurting me, and sometimes finding out what's going on in my body. It hasn't solved the mystery of CFS/ME but it has made it more bearable.

Muscle testing has been invaluable to me (despite the lack of mainstream medicine-recognized clinical testing!) I first went to a chiropractor out of desperation in the mid-1990's, after getting no help from mainstream medicine for 7 years. It cost me $50 and was the best $50 I ever spent.

 

[barbc56]

Krill oil can cause an allergic reaction. Krill is in the shrimp family. My daughter had a dangerous reaction to shrimp and she had eaten shrimp all her life..

I have no idea if this pertains to you or not. but thought it worth mentioning.

Good luck.

Barb

 

[Kitsune]

Hi Mary, thanks for your reply. I'm glad the muscle testing has helped you. The herbalist did this for me, though in my case it didn't reveal anything out of the ordinary. It was interesting that the liver detoxes - I think I did two - didn't seem to have much effect.

Barb, fortunately I've been OK with the krill oil. I'm not actually sure if it helps me a great deal, but it's a way of getting omega-3 fatty acids, and it's supposed to help with inflammation.

Maybe I should be more specific about what helped me, harmed me, etc. Problem is the ever-present brain fog and memory problems, and 11 years' worth of trying so many things that I can't remember them all. Focusing just on nutritional supplements, here is what I can think of right now.

Helped me once but I am oversensitive to it now: liquorice root extract, Relora

Used to take, or at least tried once, but didn't have any obvious effect: Garden of Life Living Multi (which I'd be willing to try again apart from the fact that it's very expensive), large doses of individual B vitamins, vitamin E, selenium, chromium, sublingual B-12, colloidal silver, colloidal minerals, adrenal glandular, D-ribose, 5-HTP, PQQ, CoQ10, various amino acids, more things that I can't remember the name of.

Could not take at all: ginseng, olive leaf extract, Lauricidin (apart from very small amounts), zinc, calcium citrate, whey powder, St. John's wort, milk thistle (and probably others I can't remember).

 

[Kitsune]

Just to bump this - my main question is what I can do to help my body better tolerate supplements, as I have tried a number of things that I thought would help but have been unable to take them; the usual 'rejection' symptoms are heart palpitations, headache, a 'wired' feeling, and then a worsening of my symptoms, possibly due to the extra stress I'm putting my body through.

I have a high-quality multivitamin on order, which might go some way to addressing any nutritional deficiencies I have, and which I'm hoping will help.

Should I perhaps look into supporting my liver somehow - maybe it's not detoxing as it should? Unfortunately I can't seem to take milk thistle, but I'm sure that's not the only option available.

My doctor says a recent test showed slightly elevated liver enzymes, and he wants me to get a scan; but I don't know if that's relevant to any of this. I don't drink alcohol and am not on any prescription meds (the usual things that cause elevated enzymes, I believe).

 

[barbc56]

@Kitsune

I am not a doctor but would think If your liver enzymes are elevated you should not do a liver flush. Actually a liver detox can mess with your liver and that has the potential to affect your enzymes.A liver detox, actually any detox can't tell the difference between the toxins and non toxins and should only be used for life threatening emergencies.

Edzard Ernst explains in the following article. He is a great source as is his book Trick or Treatment.

http://www.theguardian.com/lifeandstyle/2014/dec/05/detox-myth-health-diet-science-ignorance

Good source for info on any medication or supplement.

http://www.webmd.com/vitamins-suppl...ntid=1179&activeingredientname=detoxification


I would talk to your doctor. Good luck!!

Barb

 

[Kitsune]

Hi Barb, thanks for all the info. I think you're right - best not to do a liver flush. My doctor has put me in for some kind of scan due to the elevated liver enzymes, and I will go, though I feel skeptical as to how much that will help.

I came across this article yesterday, which would seem to explain my reactivity to supplements, and why I'm struggling to take things that in the past would not have been a problem:

http://www.holistichelp.net/blog/when-nutritional-supplements-make-you-worse/

I'm going to follow some of the advice there and pray that it works. I've got a food-based multivitamin that I hoped might heal me a bit, so that I'm able to take other new supplements as well - I used to take something similar from this company years back, though I eventually stopped because it was expensive. Of course, I am now having problems taking this too. I will persevere with small amounts, stopping briefly to let the symptoms die down, and hopefully will get there in the end.

 

[Dufresne]

My sensitivities stem from biotoxin inflammation. They got a lot worse a few years ago as my overall health deteriorated, but then stabilized and even improved when I moved from a moldy house. I still have troubles but it's manageable.

 

[Research 1st]

I never had problems with being sensitive/overreactive to anything until I developed CFS 11 years ago. Now it seems like every time I research something that sounds like it might help me, my body rejects it! I wonder why, and what I might be able to do in order to better tolerate things that would be good for me.

Just a quick bit of info. I'm on the Paleolithic diet and doing well; it suits me. Since I started that and stuck to it 3 months ago, my reactiveness to various foods has disappeared. (At first I couldn't even have the odd 'treat' of something sugary or bready because it would make all my symptoms worse, but now it's not a problem.) That's the good news, anyway.

I supplement with the following: Vitamin C (18g a day - my main supplement), Vitamin D3, Vitamin B complex, krill oil, magnesium (citrate), ginko biloba, ashwagandha, Himalayan sea salt, psyllium husk. This is a tried-and-tested regime I developed over a number of years, a core of things that really help me. I've tried lots and lots of other things that either had no effect, made me feel worse, or that worked for me once but no longer do. Some examples: B12 (oral methylcobalamin), zinc, chromium, vitamin E (mixed tocopherols), Garden of Life multi, liquorice root, colloidal silver, colloidal minerals, adrenal glandular supplement . . . and on and on.

Lately I have tried very hard to take olive leaf extract and Lauricidin (monolaurin) but could not tolerate the smallest amount. Well actually, I can't seem to win with the Lauricidin at the moment, because it's clearly giving me something I need, despite that fact that even one grain overstimulates my system and makes some other symptoms worse. When I stop taking it, I feel worse still. I can only hope my body will get used to it gradually, but it doesn't seem to be happening so far.

I started looking into the possibility of methylation problems, since I also am now alcohol intolerant. But when I took one dose of milk thistle, I felt bowled over and got heart palpitations.

I don't believe my reactivity to these supplements is a herx; that seems to be the immediate go-to explanation when the body has difficulty with a supplement, but my symptoms don't match those of a herx, they stay the same rather than fluctuating, and they don't go away. When I was seeing a herbalist several years ago I did some detoxing under her instructions as well, which involved parasite and candida cleanses and a liver flush, and I felt no different, which would suggest that if my ability to detox is compromised, it's perhaps not too bad - but then, who knows?

It's frustrating when I can't take things that I believe would help me to feel better. Does anyone know of an avenue I might explore, or is this simply something I will have to deal with/work around?

Hi, this is tricky. Everyone's had some good advice, I'll take a different approach that may well be worthless advice, but perhaps it might have some possible use for you.

I'd break it down the basis, and what you're ingesting first of all on a daily basis + the supplements.

If you have a chronic immune activation/autonomic disorder/allergic/hyper reactive nervous system state taking things like:

Ginko biloba
Ashwagandha
Garden of Life multi <-- If it has herbs or 'blends' other than vitamins/minerals.
Olive leaf extract

Is asking for trouble in my view, as they all are known to cause side effects, some even dangerous (Ginko Biloba).

So I'd cut everything out, except the basics you eat and drink and see what happens. I would also consider the possibility, that these non routinely prescribed medical supplements are interacting with your medications and central nervous system.

If symptoms persist, I would consider measuring blood IgE levels (non specific allergy marker).
I would do this at 'baseline' and I would do it during 'flair up' of symptoms also.

Naturally you can't just walk into a hospital and demand a blood test, so this needs to be sourced privately. Some companies now offer little finger prick tests to measure IgE. These are useful to purchase and store in your home. If you get a flair up, you can then measure your IgE, and hopefully someone can then put the sample in the post rapidly and send it off to a lab (if it's performed monday-wednesday) 24hr post.

Once you know your IgE is up, then you can attempt to track down any foods/chemicals/infections that cause a rise in IgE.

I would also consider thinking about measuring all your vitamins and minerals in a blood test panel (saves money) and not taking these supplements at all.

I've heard of countless patients who take huge doses of vitamins and minerals, but without measuring their blood levels first. In other words, they can be suffering side effects of excess blood levels of supplementation, believing it to be symptoms of their disease.

 

[Mij]

@Kitsune

There are many reasons for elevated liver enzymes stated here at the Mayo Clinic:

http://www.mayoclinic.org/symptoms/elevated-liver-enzymes/basics/causes/sym-20050830

I've experienced this a few times over the years. I attributed mine to viral infection.

I agree with others here have said, that you should not take high dose supplements for now.

 

[Kitsune]

Hi there, thanks for taking the time to post (to Research 1st, though Mij also posted something similar while I was writing this). I agree that if you're going to take supplements, you want to be as informed about it as possible, because it can indeed end up making things worse; and when you take several, it can be hard to tease out where the problem lies, or to blame it on something else (herx, worsening of illness, etc).

However, I have attempted to involve my GP and mainstream medicine at varying points on my 11-year CFS experience, and I cannot say they have done a single thing to help me, and the medications they gave me always made me feel worse. I have great respect for our NHS, and my GP is a lovely chap, but all of these things can sadly be of limited help - as many of us with CFS discover to our surprise and disillusionment. I currently don't take any prescription meds, and haven't for a long time, so at least there's no effect to be traced to that. Maybe testing IgE would help me, and thank you, I will look into it.

Perhaps we are approaching this from very different perspectives. I was struggling to cope with day-to-day life when I first got ill, took antidepressants to no effect, and then had my symptoms worsen when I quit too quickly. Fortunately for me, at that time I found an internet forum for people who were suffering ill effects from discontinuing psychiatric meds, run by a naturopathic doctor (a neurologist) whose protocol involved healing with vitamins and minerals, sometimes in orthomolecular doses (for appropriate reasons). That was over 8 years ago, but I've found this protocol vindicated over and over, at least in my case. The aim of it was to replenish anything the body had a deficiency in (hence a food-based multivitamin, a trace mineral supplement, etc) plus build up levels of other things that are generally lacking when a person is ill or coming off a psychiatric med (more magnesium, vitamin C, the B vitamins, etc). I stopped taking the multivitamin when I was unemployed, because it was expensive, and wish I hadn't, because it might have kept my health a bit more stable.

I know this is all anecdotal, but I don't know where I'd be without the vitamin C - I added to my doses over the years when my immune system began to struggle and I was getting ill or fighting something off all the time. The 18g a day seems to be the minimum I need to avoid those problems. I stopped taking my B-complex supplement, and found that my most troubling symptom eventually returned - a malfunctioning body clock, which was debilitating. The cheap B-complex I used to take was now overstimulating to my body, so I started on a food-based B-complex by the same company that does the multi I used to take (and am starting again), and . . . that got rid of the body clock problem. This is why, while I think it can be very helpful to ask someone to reconsider the efficacy of their supplement regime, it may not be wise to advise them to discontinue it. Particularly without the vitamins C and B, I could be so incapacitated that I would not be able to work.

I cut sugar almost completely out of my diet last July and have been eating healthily ever since, but I have always gained something from eating a lot of sugar that eases my symptoms (thus making it very hard to consistently eat healthy while I've been ill). I think it may have been the endorphin boost. At any rate, there's no way I could have carried on eating so much sugar, but my symptoms have worsened since then, causing me to re-visit my supplement regime and once again look actively for things that will help. My hope is that if I can repair things a bit, I will be able to take a natural antiviral such as olive leaf extract or Lauricidin. Currently I am not taking those because of my reactivity to supplements - but particularly with the food-based multi, if I can work up to the full dose, maybe I will address any deficiencies my body has that are causing problems. I think it's a worthy pursuit, because otherwise, the way I'm going, I will carry on being ill for the foreseeable future, with no real hope.

The only herbs I'm taking - and I agree with you, they are not endogenous substances and should be viewed the same way as medications - are the ginkgo and ashwagandha, both of which I've been taking for many years. I actually started on them to ameliorate the sexual dysfunction I experienced on the antidepressants, and stuck with them because it felt like they were helping in general. Ashwagandha is an adaptogen, and I wouldn't be without it. I quit taking it a while back and felt worse. I've stopped other supplements before without that effect, and I don't believe I was in withdrawal.

I know I've said a lot here; I guess usually I don't have the time to spend on a long post, and have been over these things so many times before, but I really do feel that I'd be lost without my core supplements, and I wanted to explain why. And it isn't just me. My daughter has suffered from migraines almost daily; I've taken her to see a couple of different doctors several times, who consistently said they don't believe there's a serious medical problem; and she's tried various things they prescribed, though over-the-counter NSAIDs still worked best (though that's not saying much). I did some research and started her on a B-complex vitamin and CoQ10 - and instead of having a headache every day, she's had one in a week, which went away quickly. It can't be said that I didn't try the conventional medical approach in her case, but again it was letting us down. Nutritional supplements, for all the flack they receive in the media (sometimes deservedly, when they are cheap and nasty - and sometimes because studies have not been rigorous, if they've been done at all), can be powerful healing tools when used appropriately.

 

[Mij]

The supplements that have helped me are the ones that I've been deficient in.

I also feel benefits from CoQ10 and take this regularly.

 

[Kitsune]

Can I ask how you knew you were deficient? Blood test results? Symptoms? Trial and error with supplements? Just curious.

I took CoQ10 for quite a long time, eventually stopped when I realised it wasn't doing much for me, and now find it's overstimulating if I try to start it again - but then, almost everything seems to be for me at the moment. But we're all different, and have different needs, for sure.

I do think there is something to be said, however, for taking supplements such as vitamin C in large doses, and some extra magnesium, though I won't go into why here because there's a large body of research and I won't try to repeat it. Though yes, it's entirely possible that too much of anything in particular will become toxic to your system, or throw delicate balances out of whack, so it's important to be as informed as possible about what you're doing, and listen to your symptoms. And if you're going by medical tests, it's as well to remember that levels of anything that are considered 'normal' can be subject to debate, and may not be anything approaching optimal. You may also have deficiencies that have not shown up on a test. In my experience, symptoms can be very helpful clues to where problems lie (though not always easy ones to follow, by any means).

 

[Mij]

I have been deficient in many over the last 24yrs of illness. I had major mal-absorption problems. I've done a good job at fixing my gut issues over the last year.

The major one was magnesium, below normal in blood(which isn't an accurate test but once it's below normal in blood then it's pretty bad). For this I took IM injections for many years off and on, oral supplementation did nothing. I felt a huge improvement, one of the best treatments I've done. I now rub magnesium chloride gel on my skin to make sure I don't become deficient again.
I also take zinc, we need this for mg absorption.

Vitamin D because I was deficient and I don't get much sun.

I had a panel of RBC fatty acid tests done years ago. Omega 3, down a 3%. I take fish oils regularly. Helped tremendously with cognitive issues.

I also became deficient in B12 a couple of years ago. Fixed that with sublingual B12 and a coenzymated B complex. I still take this but in lower doses.

I take digestive enzymes with meals.

How much CoQ10 did you take?

I found by increasing my dose of CoQ10 from 100mg every few days to 300mg EVERY day made the difference. I know it's expensive (I take Ubiquinol oil gels) but you might want to try and increase the dose to see if i makes a difference.

Anyways, those are the main ones.

 

[Kitsune]

Hi Mij, it sounds like you've been on quite a journey through this illness. I'm glad you've found ways to help yourself. I was going to add in my post above that absorption issues can be a problem too, which you've mentioned. Sometimes you can have 'normal' levels of something like thyroid hormone in your blood, but your cells are not absorbing it.

I was only ever able to take 100mg of CoQ10 in one go; tried ubiquinol at one point but it didn't seem to make much of a difference. Maybe it depends on whether you see the CFS as a mitochondrial issue, which it may be for some. I looked into some of Dr. Myhill's recommendations for this, but usually have had neutral or ill effects from those kinds of things - D-ribose, etc. I tend to get a 'wired' feeling when I give myself too many energy-boosting supplements, sort of like someone waking you with a cattle prod at 3 a.m. LOL. You're certainly awake, but feeling pretty awful!

I was just looking into trying a B12 oral supplement to address possible methylation issues and can't seem to find a normal dose for CFS patients as a starting point. Can I ask how much you take? I experimented with it many years ago, but I don't think I gave it enough time to see if it was helping before I discontinued, and can't remember much about it now, other than that it was liquid methylcobalamin.

 

[Mij]

@Kitsune Yeah, I don't like the effects of energy boosting type supplements either, they make me feel wired. I should have mentioned that I take breaks from Co10 because it effects my sleep negatively. I find Co10 helps with post exertional fatigue, in other words, it's not necessarily giving me more energy to do more but seems to help if I go over my energy boundary. So I have a problem producing more energy, I'm assuming it's a mito problem.

I've tried immune boosting type supplements and they have a negative effect on me too.

I take 1000mcg of B12/day, plus the 100mcg that comes in my b complex. When I was deficient a couple of yrs ago I took 2000mcg/day with no problems. I take the sub-lingual kind but I'm not so sure it's better than regular pill that we can chew or liquid. Others here might disagree though.

In general I'm not sensitive to vitamins like many here so it's possible 1000mcg might be too much for you at one time.

 

[Research 1st]

Quite a few PWME say they can't tolerate D-ribose, others swear by it.

Try and get as clean supplement as possible. When there's a choice, look on the back of the packet/pot and notice the cheaper ones (usually best sellers) are full of some whacky ingredients (usually as a filler/stabiliser). For 99% of people this is fine, but if you're very sensitive, will make you feel worse, or ill, or even react to immunologically.

By trying different brands, this way you can tolerate a supplement type, you thought you were intolerant of. So it's not always the supplement itself, or even the dose, it can be the other ingredients. This includes Co-Q10. If you look at the brands, each manufacturer uses different compounds, so if you can only tolerate 100mg Co-Q10, considering swapping to a brand with different stated ingredients.

I'd add B12 injection into the mix in terms of being careful about reactions. There are different forms of injectable B12. Depending on which one, sometimes PWME say B12 makes them feel awful and can cause vertigo too as a side effect. With B12 tablets, there will be sweeteners, that can give you an upset stomach or worse. So be careful to look for these ingredients once again.

If you're very keen on checking B12 levels, there's a newer test 'Active B12' (holotranscobalamin) which is more accurate than the standard GP's B12 test on the NHS. This only measures total B12 levels (Active + Inactive). Hence you can technically miss a deficiency. The same applies to hormones, such as Testosterone. An NHS GP tests 'Testosterone' (Total) and doesn't measure Free or Bioavailable Testosterone.

 

[Kitsune]

Thanks to you both. And yes, it's very important to be aware of what's in your supplements. When I was in the health food shop yesterday and couldn't find any methylcobalamin at all (it was all cyano), I said something to the proprietor about cheap supplements often making things worse instead of better. Maybe it was a bit rude of me, but it makes me angry that the shelves of so many of these shops are filled with sub-standard rubbish made with the cheapest ingredients and processes possible; they must make money from people who don't look too closely at what they're putting into their bodies.

Will get a good B12 supplement and see how I go x

 

[Viking]

Kitsune...
I have also struggled with supplement sensitivity. My issues began with a severe yeast and parasite infection. Over time i realized that the sensitivities were not constant, but would get worse whenever i was on antibioitcs, and would tend to lessen when i was on a good brand of probiotics.
Comprehensive stool testing seemed to mirror this.. when the stool tests showed better gut bacteria / less leaky gut.. the sensitivities would be less. I have heard from a couple other people that they experienced the same. In one case the persons sensitivities resolved dramatically on kefir.

I did have to go very slow on the probitoics. or the die off would be overwhemling and would set me back. Clearly its important to keep a margin of safety and stay within tolerance. I also found great differences between probotiic brands. Some made no difference, others radically improved both symptoms and stool tests.

Do you have a history of factors that could create leaky gut? Candida? Parasites? Tons of antibiotics? Does the timeline fit for any of that?

Regards,
Viking

 

[Kitsune]

Hi, Viking, thanks for your post. I wish I knew what the answer was. I've been on antibiotics a few times, but no more than the average person, and possibly less. I've tried taking probiotics regularly and, while they prevent gastrointestinal problems while I'm on antibiotics, they do nothing for me otherwise. Fermented foods, while healthy, don't agree very well with me for some reason. IBS was one of my initial CFS symptoms, but that disappeared when I started a wholefoods diet. (Dinner made with spag bol sauce from a jar sent me to hospital with a horrible IBS reaction - not your usual suspect, but I cook my own sauces now.) I've also done parasite cleanses and candida treatment. Apart from a propensity to get small, random patches of ringworm in weird places like the back of my hand, or my knee, I don't get the impression that parasites/fungus/microbial problems are a big feature of my CFS.

What I have done since I started this thread is got going with Freddd's methylation protocol. I was already taking several of the recommended supplements, and my hope is that at the very least the protocol will help me eventually tolerate things that I cannot take now. In the meantime, I've had some success so far with gradually increasing the Lauricidin, though I'm still taking far below what would be considered an efficacious dose. If anything changes for the better, I will certainly post about it.