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Being Goldilocks - too much, too little, and "just right"

Discussion in 'General Treatment' started by Dr. Frost, Oct 27, 2014.

  1. Dr. Frost

    Dr. Frost

    Hi all,

    This my first post here and it starts with an apology: I'm sorry it won't be an upbeat one! I hope to make up for this in future writings, and I look forward to introducing myself properly shortly.

    This concerns a point which, in 4 months of following this forum, I feel needs to be urgently addressed.

    The topic regards the people here which I'll term the "risk-free crowd". These are the people who say things such as: "I take Vitamin X, and you can take as much as you want because there are NO BAD EFFECTS!"

    This isn't just wrong, it's potentially lethal.

    The reality is that there are extremely few things which you can take large doses of, with few ill effects. Even a few kilograms of carrots will kill you. Almost every single instance I can think of, where people have said "taking XXXX in large doses is fine", is absolutely, totally wrong.

    An example that came up just this week: leucine, arginine and beta-alanine. These are popular amongst weightlifters, and increasingly adopted by MTHFR and CFS sufferers to help with energy and endurance.

    A weightlifting friend (let's call him Mr. Muscle) was taking vast amounts of these two proteins in "pre-workout" shakes. His belief that it was helping him build muscle and help endurance. The reality was that his high doses were ALSO causing premature ageing (leucine), neurotoxicity (beta-alanine) and huge amounts of oxidative damage (beta-alanine and arginine), as well as actually harming his nitric oxide levels (arginine). He was basically fast-tracking his own death.

    Why? Well - leucine stimulates the mTOR pathway, which is mostly involved in signaling the body's cells to divide more rapidly. Will this help build muscle? Sure. But: can you think of any other processes that you DON'T want which are a result of increased cell division? I'll give you a hint: cancer and ageing.

    And indeed, leucine accelerates both of these. In fact, cancer survivors are often placed on low-leucine diets; and many chemotherapy drugs (e.g. rapamycin) directly antagonise mTOR in their function. Despite leucine having muscle-building qualities, it is absolutely not recommended for older people or cancer survivors. In fact, it's probably not good for anyone to take in excess of the amount normally required by your body.

    However, not enough leucine is also an issue. It will result in your not having much muscle bulk - and this (sarcopenia) is a major factor in mortality with age.

    Does this sound like a lose-lose? Well, it kind of is. But that's pretty much how life works in general. Too much, or too little, of almost anything will cause harm. We use an expression in bioscience: "the dose makes the poison". It's quite true for any drug or vitamin or plant or mineral I can think of. The only way to win, is to be in the middle - not at the extremes.

    And in fact, your body has evolved over millions of years to place you directly at the "sweet spot". Occasionally it will make small mistakes, such as with MTHFR and other genetic issues. This should be corrected - but carefully.

    Almost everything you take will impact another biological pathway, elsewhere. The metabolism and excretion of almost anything will always require extra effort from certain organs, the excessive use of other co-factors and vitamins in breaking it down, and so on. THERE ARE NO "FREE WINS". If there were, you would almost certainly have evolved to take advantage of it already.

    Before you make a change, you should know everything about the knock-on impacts. You must balance everything: all the biological processes it impacts, AND the things they depend on, and the things THEY depend on.

    This takes a lot of knowledge. And if you haven't got it, you're putting yourself at risk, and you should instead go and ask someone who DOES have that knowledge.

    This goes double for ME/CFS sufferers since their bodies are, by definition, already less able to cope with added stresses and vitamin imbalances.

    Some of the most worrying examples I see on these boards involve people telling others to "add more manganese". Yes, manganese is essential. Yes, many sufferers may have impaired absorption, or require more of it to boost a certain function. But manganese is also famous for another reason - it is a powerful poison. In fact, for almost everyone, too MUCH manganese (often from industrial pollution) is the issue, rather than too little.

    The effects of manganese poisoning occur gradually but are devasatating. Parkinsons'-like neurotoxicity is one. However, many people here would probably mistake such symptoms as "oh, I have trouble generating enough dopamine" and add even more manganese into the mix.

    The recommended maximum intake for magnanese is 11mg per day. Looking on the back of my bottle of manganese supplements, I note that this number is, in fact, the dose contained in each pill. So by taking one pill a day (as per the label) I'm already at the maximum, and I haven't even taken into account the amount I obtain from my food and my water. It would not be a stretch to imagine that other people, who've been encouraged to "increase manganese intake", might take two of these pills per day... or more.

    The result is likely to be, well... if it doesn't kill you, you'll sure wish you were dead. And by the time you notice symptoms it'll generally be too late to stop the damage.

    Remember an RDI is a guideline, and often a poor one at that. RDIs are based on the "average" person. Guess what? If you're sick, you're probably not going to fit into that bell curve very well. Are you taking into account your existing health conditions?

    For example: my mother shares defective BHMT genes with me. I take betaine (as TMG), which helps. This is supported by a huge range of research papers. So, it stands to reason she should take TMG as well, right?

    Wrong. She's just had part of her pancreas removed due to methylation-related cancer. In fact, she has to take antacids to keep her stomach acids low - to avoid inflaming the surgical site and to avoid stressing the pancreas, which must produce pepsin to eliminate the stomach acid. Since TMG directly upregulates stomach acid production, it is a very bad idea for her to take this, despite her long-term acid reflux issues.

    On the other hand, the low stomach acid does probably mean she'll have to increase rates of vitamins and minerals which absorb poorly in low-acid environments. She'll also have to decrease those that absorb well in those environments. And by how much, exactly? Well, even I can't say for sure... and I know her case and her biology very well. The odds of an RDI or a web forum post getting her "dose" right is... pretty darn slim.

    The same applies for selenium, potassium, and a whole lot of other things which are commonly mentioned as therapies.

    It especially applies to common herbal supplements which can be used in therapy - things like feverfew, or rhodiola, have a spectacular range of effects far beyond just the methylation cycle. For example, they're both potent blood thinners. I also see thyme oil and oregano oil mentioned a lot - were you aware that these are both powerful liver toxins? Those who like drinking buckets of green tea - were you aware that's also killing your liver AND giving yuou fluoridosis, as well as being a powerful DNA demethylating agent? You might want to reconsider your daily matcha habit...

    The list goes on. Too much potassium is called hyperkalemia, and can cause fatal heart arrythmia. Potassium also requires magnesium to be balanced against it. Magnesium levels affect calcium and zinc absorption. Those, in turn, affect a host of other things. Popping a bunch of potassium pills - without taking care of the knock-on impacts - is likely to do you way more harm than good.

    I would not be surprised if many of the people on this forum are victims of their own self-medication. I can't blame you; I know what it is to be sick and desperate. You'll try anything... and if it helps a bit, there's a temptation to take much more of it in the hope it'll work even better. But the odds are: it won't.

    In summary: there is always a downside. Make sure you know what that downside is before you reach for your pills and potions. Just because you read it on a website, or because it's on the racks in the health food store, or recommended by friends and naturopaths... does NOT mean it's safe for you to use.

    Tread carefully, and be safe!

    8. uncoupled enos&source=bl&ots=-_5mHRVCax&sig=K1O_03xtTXK6FdVl5sl8JpA5tkk&hl=en&sa=X&ei=UARQVK_QFsv2yQSs4oGIAg&ved=0CEoQ6AEwCA#v=onepage&q=l-arginine uncoupled enos&f=false
    23. Rosea/
    Last edited: Oct 28, 2014
  2. GracieJ

    GracieJ Senior Member

    Herbs and supplements can be safely used as a valid alternative. They are not necessarily bad, they just need to be used correctly and wisely, like anything else.

    I have had ME/CFS for 24 years now. It is herbal medicine and good supplements that have kept me on my feet through raising my children, becoming a single parent, and now living alone. The worst times of this syndrome have been when I could not afford what I needed and had to go without. It was still a fraction of the cost of conventional medicine, so I am really glad I did not have doctor visits and prescriptions.
    Last edited: Oct 28, 2014
    South, SDSue, MeSci and 3 others like this.
  3. Ema

    Ema Senior Member

    Midwest USA
    I agree about the title! What is up with all these sensational and inflammatory titles by new members? This is a forum, not the National Enquirer! It just takes away from the message.
    SDSue, justy, Lou and 3 others like this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

    Hi @Dr. Frost

    Welcome to PR
    I think supplements may be useful to promote some healing. I also agree with you though about the issues around dosage and how supplements interact with the rest of our body's chemistry.

    We are desperate people, many of us. Our Dr.'s have abandoned us (mine has and not because he doesn't want to help but because the system isn't designed to let him try without penalty to him--I'm in Canada).

    It would be nice to have alternatives. It would be nice to have knowledgeable guidance when using supplements. While this is starting to happen people are doing something rather than nothing and along the way some are finding things that work by allowing themselves to be lab rats.

    I know you said you understand this. What I don't know is on what level you do. Some people have been very sick a long time and have suffered a lot and been medically abused. Experience provides a whole different level of understanding.

    I don't take any supplements presently as I can't afford them, otherwise I suspect I would continue to do so.

    I would welcome affordable alternatives. Like many here I am housebound/mostly bedbound and have been sick for a long time.
    It's great that you have found this site and want to contribute. It would be great if you stay and decide to advocate for better treatment for a group of people medicine has up til now maligned and neglected.
    Last edited: Oct 27, 2014
    snowathlete, SDSue, alex3619 and 3 others like this.
  5. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

  6. Gingergrrl

    Gingergrrl Senior Member

    I have to agree and was given no warning by my doctor in 2010 when he gave me the Levaquin samples that almost killed me. Big Pharma kills more people than supplements IMO.
  7. GhostGum

    GhostGum Senior Member

    Vic, AU
    A good post, given the amount of supplements some of us juggle it is always good to have a reminder on being more cautious and refining doses. Also agree about the above comments on pharmaceuticals though, scary the amount of issues relating to them which is just accepted somehow.

    I think the fact of life too is there is always risk, in an endless amount of things, basic diet is an obvious one, and knowing with certainty which long term use of which supplement may or may not cause issues does not seem like an easy thing to know for sure; other than the obvious.

    @Dr. Frost you seem to be someone quite informed with a background in the subject, maybe if you had the time you could share your opinion on specific issues and discussions. This post is good but will just be buried before long.
    taniaaust1, Snowdrop and zzz like this.
  8. Kati

    Kati Patient in training

    @Dr Frost got some very good points out there.

    Imagine a peer telling patients with hypokaliema (low potassium) and getting chest pains to take bananas? This has happened on this forum before. Potassium has a very narrow range of 'normal'. too low or too high, it can kill you.

    I just read on another thread someone recommending coffee enema to a patient who has just been told has primary biliary cirrhosis. Excuse me? Coffee enema and 'liver detox', whatever that means are no treatments for PBC. I remember this patient who had daily enemas because his bowels never felt quite right. It happens he had stage 4 colon cancer and came to the doctors too late. I always add the story of my mom when given this opportunity. I was 16 when she was diagnosed with breast cancer. She was told to go to the hospital the next day, they would do a mastectomy because it was the way to go back then. My mom said no, and she started all these natural treatments. Eating organic, eating raw, different kinds of diets, supplements, fastings. It was horrifying. when all fails, as I knew it would she got pressured by her siblings to go to the hospital and get tretments, it was too late. The cancer had spread. She received chemo regardless and her severely fungating tumor size of a grapefruit resorbed to her chest wall in a matter of weeks. She did not live to see her grandchildren. Early treatments of cancers matter.

    Most if not all on this forum are not medical practitioners. Making recommendations to others on supplements and vitamins is not kosher. We do not know the health history of anybody out there. Patients can whithold some very important information about their health.

    Be careful out there on what you are telling other patients to do, and what information you are taking as the absolute truth.

    As for those who are saying that they do it because they have been left behind by their doctors, especially in a country like Canada where we have 'universal health care', it's time to speak up and fight back. There were over 411,000 of us as of 2010 in Canada and 0$ in funding for research. We all pay our governments for health care and we get nothing. By not saying a word, we are accepting that the way we are being taken care of is totally fine with us. It's not.
    zzz, alex3619, Dr. Frost and 2 others like this.
  9. Gingergrrl

    Gingergrrl Senior Member

    @Kati I am so sorry about your mother and did not know you had gone through this. I can now see why you are such a dedicated cancer nurse.

    I hope my post did not sound like I am opposed to standard medical treatments or meds and nothing could be further from the truth.

    There were some times in my life that I have had doctors grossly misinform me re: meds and side effects. Whereas on PR, I know I am speaking with fellow patients and do not have the same expectation when I ask for feedback re: a supplement than when I ask my doctor re: a med.

    However I often find very knowledgeable people here with similar life experiences vs. doctors who have gotten their info from the pharma reps. I currently have two great doctors helping me but this was not the case until a few mos ago.
    Gondwanaland and MeSci like this.
  10. Kati

    Kati Patient in training

    @Gingergrrl we all have different experiences with health care, for the most part, they are traumatic with our disease.

    We are all also entitled to our views, and we each have a context, or a story if you will which makes us who we are and which makes us react differently to what is being shared on the forum. i very much agree with @Dr. Frost. And with my upbringing and my mother's story, I will not accept alternative therapies as medicine, never ever. My sisters have different takes on that, but not for me.

    While I respect people's choice to pick whatever treatment they wish, I think people need to know that what is being shared on this forum may be harmful to at least some because we are not physicians, and because we do not have the full context and story of the person we are addressing to.
    Dr. Frost, Misfit Toy and barbc56 like this.
  11. barbc56

    barbc56 Senior Member

  12. Misfit Toy

    Misfit Toy Senior Member

    I have had horrible experiences with both meds and supplements. Some supplements I was on just about destroyed my life.

    Years ago, I went to a Dr. Dulin in Farmingdale, NY. He was an orthomolecular chemist. He felt my whole problem was adrenal. I was put on Serine, NADH, Vitamin B, Niacin, Phosphatidyl Choline, Tyrosine, Vitamin C and told to eat chicken 5 times a week and the diet was nuts. Absolutely nuts.

    I got much better...I was back to school, back to work, my endo had shrunk and then.....I gained 25 pounds and looked roley poley. I looked like a little oompa loompa. Why? I was fat and orange from too much Vitamin A which he insisted I joke, I was orange. Like a carrot. Anyhoo, I had been complaining about this for a long time. It was to clear my liver. Right.

    So, 2 years in, I am heavier, tired, not feeling good. He tells me to go off of everything. Stop all vitamins. I lost 18 pounds in 3 weeks, my brain didn't know what the hell was happening and I was sweating profusely constantly. I was having panic attacks, had to quit school and work....all in one month. I wanted to go into a mental institution. Tyrosine and NADH is nothing to mess around with. I was on 35 pills a day. All natural, all healing and SAFE. So I was told. My body went downhill and I got so sick and for a year, I was a mess. Endo came back on and he REFUSED to put me back on anything to help me, said I was an anomayly and walked away and shut the door on me. That was probably the worst medical experience of my life with this condition because I could not function at all. I was better before I started the supplements and now I was on death's door.

    It was not normal to lose 18 pounds in 3 weeks. I used to call him, Dr. VOODOOLIN because he in my mind practiced voodoo. Take 3 pills of this today, take 5 of this one today. It was bullshit. And yet, people love this guy. Not me.

    PLUS, I was on the same foods for actually 3 years with him and he had me eradicate orange juice, tomatoes and strawberries. Do you know that all foods that he had me not eat, I am deathly allergic to now. I could eat them fine then, but then going off of them for 3 years caused me to have major allergies. No more orange juice for me, or tomato sauce. I blame that crazy diet and his absurd strictness that only ended up making me sick. And, I listened because I was desperate. Desperate. Desperation never leads anywhere good. THINK. And yet, Xyram was desperation...but once only.

    Supplements, methylation and meds are nothing to play around with. If you do, get ready for a possible backlash.

    I have never seen, really seen any supplement or medicine work with us long term without some backlash. That does not mean, don't try it, but no one is God and they are "practicing medicine."

    Now, I take the basics. Magnesium, Vitamin C with E-lyte liquid minerals which are easy to absorb and vitamin D. I love salt and make sure to eat it, but I keep it simple. My body doesn't like being messed with. I do enema's every now and then...I like to clean myself out and I notice, sometimes, a clearer head or maybe I just think I do, but I see doc's and keep plugging with regular docs over alternative meds.
    Last edited: Oct 28, 2014
    SDSue, justy, Dr. Frost and 3 others like this.
  13. Martial

    Martial Senior Member

    Ventura, CA
    This is why you do research before taking things and find out if doses are in safe ranges for each individual case, I agree some things in excess can be harmful for you. Your post though might detract some amount of people because its very fear focused, rather then just say be sure you keep things in moderation. Careful not to take too much of x,y,z, supplement/herb because this side effect can happen in higher doses, etc. I definitely agree even things handed out by naturopaths or doctors can sometimes be harmful. This is why it is very important to look into things yourself on top of doctors recommendation, just being aware of things to look out for is very helpful.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    If this illness was actually recognized by medicos as a real illness many years ago than people wouldn't be trying to self treat.

    I think it's important to read up on anything you take even from a doctor as they aren't exempt from mistakes either.

    If someone says that a certain treatment helps them ,many of us don't blindly jump on uninformed and if they find a good doc than they have someone to also to talk it over with.

    I have come across many patients, not cfs people who blindly take what their doctor prescribes and have no idea what they take certain meds for andsslowly over the years accumulate many meds, how they interact know one really knows.

    This seems to be turning into a thread on alternative vs conventional medicine, it shouldn't be. It should be about people trying to be as informed as they can. If they want to try alternative medicine then they should seek out a doctor with knowledge in this.

    I think we should be trying to use the best of both worlds. But as said in early posts , many are left out in the cold by doctors, so experiment on their own out of desperation. I wouldn't expect one to just sit on their hands, but advise to research these things and be informed. It does help to read others experiences, but I guess don't take it as gospel, again research and careful of some sites that are no more than an advertising site dressed up as some sort of scientific study.

    it's like when u buy something expensive, get 3 quotes first???
  15. adreno

    adreno PR activist

    Yes, yes, yes, it's a dangerous world.
    xrunner, Ema, Valentijn and 1 other person like this.
  16. Dr. Frost

    Dr. Frost

    Wow: I must say I am (pleasantly) surprised by the number of responses here in such a short time. I look forward to discussions with you all!

    For the record, I should note that I'm not coming from a position against self-treatment, or the methylation cycle. Indeed, I take my hat off to Freddd and Dr. Yasko and Ben Lynch and Dr. Rosenberg and all the others who have helped to pioneer the emerging field of nutrigenomics. In fact, their work (and indeed this forum) helped to save my lite - quite literally.

    What I AM against, in a nutshell, is: haste and ignorance. Too many people are falling victim to "confirmation bias" in reading the latest published study/journal/magazine/blog/Vine and jumping to the conclusion that

    a) this is what's been missing from their life, and
    b) they should take/do lots of it.

    Yes, there may be truth in the information. Yes, it may even be helpful. But if you've looked into biology, genetics (or nutrigenomics), the very first thing you notice is that things are interlinked. Like Pee-Wee Herman's breakfast machine, doing something in one place causes something totally different to happen elsewhere... and the final result is something else again.

    Biology is a crazy-complicated thing and there is always, always, always a knock-on effect. Quite often, this effect is a trade-off. You sacrifice something to obtain something else. You are Goldilocks, and you have to get the porridge that is just right... and oh, by the way, there are some bears nearby.

    Arginine is a great example of this: too little and you cannot make enough nitric oxide in your blood. But too much arginine, and it oxidizes BH4 and turns off nitric oxide synthase, causing NO levels to plummet... and what's more, also runs around creating peroxide radicals which viciously attack your cardiovascular and nervous systems. But if you can balance on the knife-edge of "just right", you get to have energy and avoid horrible neural and heart issues.

    I stand guilty myself. Quite often I think I have a grasp on a process... and then read a piece of information months (or years) later which throws my conclusions into disarray. Sometimes it's conflicting - valerian (valeric acid) is a perfect example of something which regulates one issue I have, but is horribly destructive for another of my issues. Depending on what month of 2014 you've caught me at, I would tell you that I'm ambivalent to valerian, or that I think it's the bee's knees, or that I think it's the devil. (currently, my view is a combination of all of the above, and I take a very carefully-measured dose of valeric acid, very gingerly.)

    So... what to choose? That's the art and the gamble. Science is continually advancing and we never, ever have the complete story. And that's the point: never, ever assume that you have "the" answer. Always assume there may be something horrible around the corner... and so, dose your medicine carefully. Always ask "what's the catch"? And if you don't see one, don't assume there isn't one. There is; you need to find it. And then... and ONLY then... can you make a judgement call.
  17. adreno

    adreno PR activist

    Right, many issues here are about choices and priorities. Do you want to be a body-builder? Then you need to activate mTOR. You want longevity? Inhibit mTOR.

    Choline seems great for memory, but terrible for mood. Inositol and glycine helps me get good sleep, but also gives me terrible brain fog and grogginess. Coffee gives me energy and focus, but also jitteriness, aso, aso.

    You can't have your cake and eat it, too.
  18. Snowdrop

    Snowdrop Rebel without a biscuit

    "Like Pee-Wee Herman's breakfast machine, doing something in one place causes something totally different to happen elsewhere... and the final result is something else again." (post #16)

    If only Dr.'s would take this more seriously when thinking about what drugs they are giving to patients.
    At the end of the day Rx drugs from your dr and nutraceuticals are not so different, as we well know. Many drugs are plant extracts. The problem lies with the supplement industry being unregulated and unsupported by good data although in some cases that is changing too.

    @Kati I have very little energy/fight left in me for direct action. If there is anything happening here in Canada that you are aware where I can contribute from home I would be glad to hear of it. Meanwhile my mission has been to educate my family and for them to educate there friends both personally and through social media.

    We cannot afford to wait longer. We need more and better effective treatment options.
  19. NilaJones

    NilaJones Senior Member

    There is a very good chance that this forum saved my life.

    When I found PR, my CNS symtoms were terrible. It was very dangerous for me to be living alone (I kept setting fire to the kitchen, leaving doors unlocked, etc.) but I was far to sick to make arrangements to not live alone. I couldn't even brush my teeth and floss on the same day -- i had to alternate days.

    Yes, I have made mistakes. I have taken too much of one thing or too little of another and created new problems. So far they have been resolved by adjusting doses.

    I have also made vast improvement. I am now able to be out of bed 10-12 hours a day. It used to be 4, and all I did then was move from to the bed to the couch. I can think clearly enough to read scientific papers. I can remember what happened yesterday. I have not set fire to the kitchen in ages.

    I agree that people should not take anything, natural or pharmaceutical, without checking into it. I share your irritation with claims that natural products have 'no side effects'.

    I also believe that this forum, as a whole, knows more than any doctor on earth about safely treating this disease.
  20. Gingergrrl

    Gingergrrl Senior Member

    @heapsreal I think that may have happened b/c the thread title was about how supplements can kill you which implied that meds from doctors are safer. IMO, there are also many threads on forums re: patients sharing info about pharmaceuticals which can be equally dangerous. People discuss anti-virals, antibiotics, and serious things like heart and blood pressure meds. This is often because patients cannot get this info from their doctors and turn to their fellow peers and sufferers on the web for feedback.

    If I get well, it is b/c of the info that I learned on PR that led me to my CFS specialist and treatments which include many supplements. In my case, I take the info that I learn on PR, and then do my own detailed research and make educated decisions. No one should take anything they are not comfortable with and have not checked out. This is my biggest regret with taking Levaquin but I cannot go back in time or change this now!
    Last edited: Oct 28, 2014

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