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Most important supplements...

Discussion in 'General Treatment' started by CatherineF, Apr 15, 2013.

  1. CatherineF

    CatherineF

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    If I have really tight budget which supplements should I choose?

    Right now I am taking:

    Coenzyme Q10 (Ubiquinol) 2x100mg
    Omega 3 2x1g
    D-ribose 3x2 1200mg pills
    Acerola 3x500mg capsule
    Panthotenic acid 2x500mg
    Magnesium chelate 2xtbl (not sure about the dose)
    Chlorella 3x5 250mg pills
    Hawthorne 1x500mg pill
    L-carnitine 2x250mg
    Fish oil with A and D vitamins
    Herbs for sleep

    Nothing seems to help (I am taking them for 1 month only)

    I wonder whether I should beging Methylation-improving protocol, by dr Yasko?

    Could you give me some good advices? Because of my fatigue level and brain fog I am not able to read as much I would like and need to. Right now I am reading about dr Myhill's protocols and she recommends supplements I listed above and some for methylation.
     
  2. Plum

    Plum Senior Member

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    Hi

    I can only speak of my own experience and I would always suggest people look into stuff themselves because we're all unique.

    I did Dr. Myhill's protocol and it made me super wired and did nothing positive for me so I stopped it.

    If yr supplements aren't helping don't take them.

    I have been on everything and anything supplement wise and very little helped due to my gut issues. If you have food allergies or leaky gut which are very common in ME and people aren't always aware they have it - I would concentrate on this first as it will make it hard to breakdown and use any supplements.

    From your list I would do the following:
    Make sure your diet is as good as it can be - organic vegetables and fruit, complex carbs and good amounts of protein. This will give you a lot of yr essential nutrients and cofactors.

    I would also look into eating oily fish a few times a week - this is cheaper than a decent omega 3 supplement.

    Magnesium - I would take a true food variety as it is easier for ME people to breakdown and use.
    Chlorella is great but expensive - unless yr dealing with toxic metals I wouldn't take it if money's tight.
    I would include a good quality probiotic
    I would include vitamin D

    If you have the money I would get tested for nutrient deficiency by a functional lab like Genova and then only take additional supplements that they recommend.

    The last thing I would consider is a good liver detox supplement. NOW does a great one which is affordable.

    I wouldn't take anything else.

    It has taken me 3 years of healing my gut and 6 months of Perrin to be able to use supplements. I believe that you need to start with diet and work up from there.

    The methylation protocol is very affordable if you want to consider that.

    I would also only take 1 supplement at a time to really see how yr body handles it and then add in something else.
     
    CatherineF and justy like this.
  3. baccarat

    baccarat Senior Member

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    ditto
    In addition, I personally feel that most supplements can make people worse over time. It certainly happened to me.
    For brain fog, over the years, I tried many supplements but only two did make a significance difference in my case: resveratrol and huperzine A.
     
  4. CatherineF

    CatherineF

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    Plum - thank you for answer.

    Such amount of supplements indeed is problematic because I have no idea what helps and what is making me worse.

    In my case additional factor impeding my healing is UARS (really terrible sleep quality) that I am not able to treat correctly.

    Due to hypoglycemia I am not able to eat fruits and my diet consists now moslty from: meat, vegetables, eggs and nuts and seeds, with little dairy. I am trying to buy some organic food but it is really hard to find such meat where I live.

    I forgot to mention that I do take probiotic, it really helped me with LPR which was very severe few months ago, now I feel that no acid is coming up and I have less problems with constipation.

    What form of vit D should I take?

    I will look into the supplement for liver support you mentioned.

    How did you heal your gut? You could not tolerate supplements? How did you know this?

    If it comes to methylation, I will give it a try, although I fear adverse reactions (especially insomnia problems), but it can't hurt me much overally, can it?
     
  5. Plum

    Plum Senior Member

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    Terrible sleep - why? what is causing you to have this? Your hypoglycaemia could be exacerbating this. Blood sugar imbalance during the night causes adrenaline surge causes problem sleep. Adrenal issues common in ME causes cortisol imbalance = problems with sleep.

    You eat a paleo diet which a lot of ME people do well on. Are you eating organic veg? Meat - look for grassfed if possible. If that's difficult try and find meat from farmers who have good animal husbandry practices. For example I get meat from small farmers who are almost organic - animals left to roam outdoors all day and graze etc.

    Vitamin D: http://www.mercola.com/article/vitamin-d-resources.htm

    Healing yr gut - look into aloe vera (I think 50ml is recommended daily), glutamine and homemade bone broth. To learn more about the benefits of bone broth http://gapsdiet.com/INTRODUCTION_DIET.html there are better links so do a google search for GAPS diet, bone broth and leaky gut

    I started the methylation protocol and it actually improved my sleep. I've had to stop it for now as I need to focus on something else. I personally wouldn't start this until your diet is as good as it can be and you have the supplements in place that you want to take. I think with ME you have to take one step at a time and not overload your system.

    Hope that helps.
     
  6. ukxmrv

    ukxmrv Senior Member

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    I`ve spend many thousands of pounds on supplements and had very little help from them. My best results gave been from MAF314 and antivirals / immune modulators.
    Those of us with little funds or access to testing are really stuck. It's just due to luck if we find anything something that helps.
    Bad results from trying different regimes really did harm me. It took about a year to recover from some of my early attempts to raise glutathione (as an example).
    If supplements aren't helping you then maybe it us time to look somewhere else and save the money for that?
     
    Plum likes this.
  7. adreno

    adreno 3% neanderthal

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    Supplements can help a lot if the right ones are taken at the right time. But random supplementation is unlikely to help.

    For general advice, a good multivitamin, with active B vitamins (I like Thorne Basic Nutrients) is probably a good place to start. Add sublingual B12 (I would recommend methylcobalamin). Additionally, an anti-inflammatory like curcumin will likely be helpful for many.
     
    cph13 and Plum like this.
  8. CatherineF

    CatherineF

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    Thank you for answers. I have huge problems with access to proper tests and this is very difficult to obtain good results.

    I thought that there are some supplements that all CFSs should take...
     
  9. tandrsc

    tandrsc

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    I think I agree with what everyone else has said, the only thing I would add is to do your best to be informed about the latest research in ME/CFS.

    If you only have the energy/concentration to read one article a day (or every other day) read the latest one on Cort's blog - http://www.cortjohnson.org/ - this will keep you up to date with the latest thinking and may guide you to which supplements to try.

    For example, if you think the faulty immune system studies describe your symptoms it might guide you to try supplements that regulate the immune system.

    A few months ago I was also in a state of confusion about supplements but by being informed I feel far more in control and most of the supplements I now try help because I know what I'm expecting from them. I never spend a lot of money.

    I take powders and liquids rather than pills as I hate taking pills and don't think my digestion is strong enough to absorb pills properly anyway. Little and often also seems to be the key, e.g. a small amount 3 times a day rather than a larger amount once a day.
     
    Plum likes this.
  10. Plum

    Plum Senior Member

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    I should add that the things which have helped me the most aren't supplements. Changing my diet - getting rid of gluten, eating mainly Paleo, reducing sugar and trying to keep blood sugar as balanced as my energy allows has been very important.
    After that, Perrin has been helping me the most and I really enjoy my sessions.
    The only supplement I swear by for myself is liver detox herbs by NOW. I have to take 2 to 3 of these a day. Milk thistle on it's own doesn't cut it for me.
    The only other supplement that has ever helped has been probiotics.
     
  11. baccarat

    baccarat Senior Member

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    [quote="CatherineF, post: 348205, member: 10561"
    I thought that there are some supplements that all CFSs should take...[/quote]

    There isn't any study I'm aware of concluding that certain supplements are helpful in ME.
    Certain ME doctors and their websites may recommend certain supplements but this has not been validated by any study. Nor it seems from people's own experiences, otherwise you'd certainly see running threads with plenty of success stories on this site, whereas there aren't any.

    There is some evidence instead from a small study conducted by Rich that methylation may be an issue and therefore the simplified methylation protocol may be helpful. Apart from that, from personal experience with most of the supplements mentioned in earlier posts, it's unlikely they can really help and personally I think they're more likely to do harm.

    On the other hand, if you asked around how many people around have improved their health in a significant way by taking supplements, I'd be surprised to see anyone raise their hands. I'm only referring to improvements that take you from a state of being hardly able to leave home to one where you have a decent life.
    The treatments that can really help (but not everyone unfortunately) are very very few but if you look around this site you'll find one or two.
     
    ukxmrv likes this.
  12. caledonia

    caledonia

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    It sounds like you started all of them at the same time. This isn't the best idea because you won't know which one is working and which one may be causing problems.

    In general, you should start one supplement at a time, and even start with a fraction of a supplement if necessary and work up from there to a normal dose if you're able. This called "start low and go slow". It helps prevent adverse reactions.

    I agree with starting with the gut to make sure you can absorb the nutrients from food and supplements. A general gut program is a gluten free/dairy free diet, probiotics, digestive enzymes and then betaine hydrochloride if you have low stomach acid. Perversely, acid reflux can be caused by either low stomach acid or high stomach acid. You can try the "baking soda burp test" (google it) to see which one you might be. Eat whole foods, nothing processed - organic or grassfed if you can, but I wouldn't obsess over it if you can't afford it. A lot of ME/CFS patients do well with a paleo type diet, so you're in good company there.

    I just heard about bone broths helping leaky gut, so I'm interested in starting that myself. It also helps with bone health, so it's a good all around nutrition.

    If you're having constipation, increase the magnesium. Increase gradually until you get very loose bowels, then back off a bit and that will be "your" dose. Make sure you're not taking magnesium oxide, which doesn't absorb well. So anything like magnesium glycinate, mag citrate, mag taurate, etc. is ok. The magnesium may also help with sleep and heart palps, twitchy muscles, etc. so it's a good all around one.

    Like somebody else mentioned, it's better to divide up doses and take supps throughout the day. This is so they absorb better. I take mine 3-4 times a day (with meals so it's easy to remember).

    Then, just to get you feeling better and at some kind of baseline, I would suggest going after your most bothersome problems. So if sleep is a big issue, address that next. I've had better luck with magnesium, melatonin, theanine or GABA, kavinace, etc. than with herbs. However, there is one herb I like called Seditol.

    CoQ10 works really well for me for brain fog, but if it hasn't helped you already, it's probably not going to be helpful. Same with ribose, l-carnitine and herbs for sleep. In my experience, they work quickly or not at all.

    I also agree that the Thorne Labs multi + sublingual methylcobalamin is a good suggestion for broad spectrum nutrition "insurance". This combo will contain some of the same supps as a methylation protocol. I get good relief from MCS just from the methylfolate in the Thorne, which means it's helping raise glutathione (one of the goals of methylation).

    After you've gone after the "low hanging fruit", then you can try a methylation protocol in earnest. The reason I'm saying this is because it may be months before you see improvement in various areas depending on how fast or slow you can implement it.
     
  13. rlc

    rlc Senior Member

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    Hi Catherine, there are several possible reasons why your supplements don’t appear to be working, one could be vitamin D deficiency, have you had vitamin D3 tested?

    The supplements you are taking are beneficial to mito function, however the mitochondria produce energy by making ATP (Adenosine triphosphate). Phosphorus is a vital part of ATP, and without enough Vitamin D, you can’t absorb enough phosphorus to make ATP. So what you are taking may be benefitting your mito, but this will have no effect on how you feel because it is the ATP that they make, that gives you energy, and your body can’t make this ATP even with functioning mito, if you are deficient in Vitamin D and therefore phosphorus.

    You say you are taking fish oil for vitamin D, if you are severely deficient in vitamin D, then there is not enough vitamin D in fish oil to solve the problem, doctors will give courses of 50,000iu vitamin D3 pills to fix vitamin D deficiency, if you tried to take enough of the fish oil you are taking, to get this amount you would end up with Vitamin A poisoning.

    Calcium should always be tested before taking large amounts of vitamin D,if it hasn’t already been, because this will show if you have any of the diseases that you cannot take large amounts of vitamin D with.

    I take a strong multi vitamin with my mito treatment as well, because it makes sure that you get enough of all the other B vitamins and trace elements to help the mito work.

    The other possible reason for the supplements not working is that you have something else wrong with you and your mito are not damaged, I see you have cavitations, that may be the cause of some of your problems, and needs to be looked at.

    You mention in your other post that you have nutritional deficiencies, depending on what these are they may be contributing to your illness, or maybe a sign of other conditions, affecting your health.

    Has anybody tried to find the cause of your hypoglycemia? It can be caused by a large amount of diseases, this site lists 222 possible causes, many of which get wrongly diagnosed as CFS http://en.diagnosispro.com/differential_diagnosis-for/vegetative-autonomic-endocrine-disorders-hypoglycemia-causes/10859-154-220.html you need a doctor who will investigate this, as Hypoglycemia could be causing a lot of your symptoms, and what is causing ithe hypoglycemia may be very treatable.

    It doesn’t sound like you have been investigated very well by your doctor for other condition? These two articles explain what tests need doing, that often aren’t done, and explains that a lot of reference ranges for tests are wrong leading to people being misdiagnosed as having CFS, check them out and make sure that you have been tested for all these things, see http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome and http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat if you have these tests done it will help to rule out a lot of possibilities.

    It sounds to me that what you need most is not large amounts of supplements, but a doctor who will take the time to investigate you properly, because it sounds like this hasn’t been done yet??? And there are other possible diagnoses that may have been missed. e.g cause of hypoglycemia, cause of nutritional deficiencies.

    Hope this helps

    All the best
     
    cph13, CatherineF and Little Bluestem like this.
  14. CatherineF

    CatherineF

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    Plum, thank you so much for good advices, I am going to adress leaky gut issue first. I had high hopes of supplements but I see this is not a way for me, at least not in the shape I am doing it now.

    baccarat, I thought that supplements may be so helpful in this disease :( It is sad that they are not. If supplements don't work it is impractical to spend so much money on them. I will change my diet completely, I see this can be a better idea. Thank you.

    caledonia, you gave me so many good advices too, thank you. What about digestive enzymes when I have ulcer/gastritis problem? I will definitely try methylation protocol, I am waiting for supplements now.

    I'm sorry for my language mistakes, but I am in such huge fog today that it is impossible to focus.
     
  15. CatherineF

    CatherineF

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    rlc, you're right that I didn't have almost any tests, I couldn't find the right docotr. The ones I've been too said it was depression, that all is in my head. But my health level is declining very fast, also I have so many symptoms of CFS like: severe fatigue, unrefreshing sleep, POTS which become very severe, hypoglycemia when I crash, post-exertional malaise, constant rhinitis and many more.

    I am trying to reasearch on my own, but I am sure now that this is not enough.

    My main contributors to CFS are: UARS, less severe than sleep apnea, but it drains my energy. I've had a small surgery for it, but it didn't help, I am not able to use CPAP machine to treat it properly and this may be the biggest factor contributing to my health level decline. I would not survive maxillomandibular advancement surgery and I am not even sure whether I would be able to tolerate metal in my body.

    Cavitations issue is even more difficult because I am sure that I am not able to find a doctor who would take care of it and I can't afford to travel. The concept of cavitations is so new, but is it really true?

    I don't have signs of cancer, like loosing weight, night sweats, high CRP or ESR, but sometimes I fear that it is something that "eats" me from the inside really fast. I've had too many x-rays and CT scans of my head to do this again and again, so I can't check it either.

    All I can do right now is rest, eat gluten-free, stone age diet, try to manage my hypoglycemia with it and somehow improve my sleep quality. What other choice do I have?

    Thank you for your advices.

    All the best to you too.
     
  16. caledonia

    caledonia

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    I'm not sure if those would be rough on a sensitive stomach or not. They seemed very harmless to me.

    Have you been tested for helicobacter pylori (causes ulcers/gastritis) and are you taking antibiotics for that?
     
  17. Plum

    Plum Senior Member

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    I wouldn't take digestive enzymes with an ulcer. I would test for H pylori and then do leaky gut treatment as it should help heal an ulcer too. By that I mean things like - aloe vera 50ml daily, glutamine, bone broth with every meal. I would also probably go onto the GAPS diet until the ulcer healed.
     
  18. rlc

    rlc Senior Member

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    Hi Catherine, it sounds like you have been given quite the run around by your doctors, and that they have just labeled you as depressed, from what you’re saying this isn’t acceptable, you have hypoglycemia, nutritional deficiencies, cavitations and possible UARS, a good doctor should be following up on these problems and finding the cause.

    I don’t know what the medical system is like in Poland, but if at all possible you need to find a better doctor who will investigate your symptoms properly and find out what is going on. If you haven’t had intensively testing to rule out other conditions, it is quite possible that you have some other disease, that hasn’t been diagnosed, and this could be very treatable. So it is very important to get a doctor who will take you seriously, and test you properly.

    It also sounds like you need the sleep study redone to find out what is going on there, if you couldn’t sleep during the first sleep study, they should have repeated it until you went to sleep, at the moment it sounds like they are just guessing with no evidence as to what is really happening.

    Are your cavitations diagnosed by X-ray or CT scan? If they are then it shouldn’t be too hard to get treatment, Cavitations have been recognized as a serious condition since early in the last century see http://behmnaturaldentistry.com/natural-dentistry-services/cavitations/ A family member of mine had there’s fixed in the 1960s, when they showed up on X ray.

    I think a lot of the recent controversy about them, has come about because of new machines like cavitat scans which some sources don’t recognize, and some people are even saying they can be diagnosed with Kinesiology, which is seen as very alternative, if not quackery by modern medicine. Again not sure what the medical system in Poland is like, but it most western countries, if an X-ray or CT scan shows a hole in your jaw, it is very standard practice for an oral surgeon to fix it.

    My opinion is that you need a better doctor ASAP who will investigate you properly, if you can, get a family member or a friend to help you find one, as it can be very hard to do the research to find one, when you are sick.

    Until you have a correct diagnosis then any attempts to treat it, with supplements are very likely to be a waste of money, as you don’t know what you are targeting, unfortunately the symptoms of CFS are found in over a hundred diseases, so nobody should accept a CFS diagnosis until they have had all the other diseases ruled out. You appear to have problems that would explain your symptoms, but you haven’t been given effective treatment or testing, so it is unlikely that you have CFS as well.

    Try not to worry about have some disease that is going to kill you, if you have been sick for a long time chances are that you are unlikely to have anything fatal, you just need a good doctor to diagnosed and treated you properly.

    Hope you are able to find a good doctor soon, they do exist!

    Take care

    All the best
     
  19. lastgasp

    lastgasp

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    Just a word to say that D_ribose lowers blood sugar, I've seen people recommended only taking it if you're going to eat something sweet afterwards to counteract that. But a bigger problem I had on it was gut dysbiosis. Could encourage candidiasis too, you've probably seen Dr Myhill say iit can be partially absorbed through the mouth which is another option to taking capsules or in drinks. Personally I just tend to reserve it for relapses now.

    Enzymes are okay as long as you don't have an ulcer, you should probably notice any effect within a week or two. I'm pretty dependant on them as my digestion was getting terrible. THere's also betain hydrochloride for low stomach acid (as long as you don't have an ulcer, again), possibly more noticeable with digesting protein.

    If you've dysbiosis some antimicrobials may help like ginger and oregano oil. Ginger is mild stimulant though, not sure if this goes for the extract or the whole root only. Kefir is said to be very good if you can tolerate dairy.

    Re trying one thing at a time; a problem with this is that some supplements (like mito ones) tend to work synergistically boosting each others effect. An alternative would be to concentrate on one bodily system
    at a time, eg. gut or energy metabolism (though easier said than done).

    I'm not very up on methylation stuff but taking some form of B12 is probably a good idea.

    I don't get very big results from supplements but some of them kee me ticking over, extra co-Q 10 has helped with cardiac symptoms.
     
  20. Jarod

    Jarod Senior Member

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    It sounds like you are describing somebody in really tough shape. Probably depends on how sick, how long, and what infections the patient has.

    My main issues are mental fatigue and cognitive dysfunction. I have high lead, and bacterial infections. Chlamydia pneumonia for sure, and probably untreated lyme for years to go with the chlamydia.

    In my case, I'm not bedbound anymore but was bedbound for 6 months after some reckless treatment at a hospital.

    I was in remission in the past(after being bedbound) with supplements (basing my treatment on a modified freddd's protocol). It wasn't until I took a chelator that screwed up my stomach and made me crash.

    It's been a couple years since my remission. I now take supplements which add enough functionality and manage GI health, mood, etc, but think I am improving slowly again with special attention to gut health and replacing those minerals stripped by the chelator.

    It might take a two pronged approach to healing. First stage is to be well enough for supplements to work. This requires a somewhat healthy gut. For me this means a clean diet, no caffine, and being careful with gluten and cheese.

    I actually required anti-biotics initially my case before getting on strickly the vitamins. If one isn't too sick, healing can probably be done with just supplements and no medications(depending on what one has).

    With liver and stomach issues, any medications/foods can really be a nightmare for some of us. So avoiding certain medications can be just as important as supplementing correctly. I'm guessing this comes down to if one has the liver and billary issues.

    Sorry I can't read the science like many of you can, so I hang out here and try to learn bits and pieces from everybody else. I also have seen a few CFS docs and have learned from them.
     

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