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My recovery protocol, ways to improve it anymore?

Discussion in 'General ME/CFS Discussion' started by amaru7, Mar 22, 2014.

  1. amaru7

    amaru7 Senior Member

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    I set out as a time frame 6months, until I can see, wether I'm going the right direction and improving and 1.1/2-2years to recover so good that I can do what every other healthy intelligent bloke might do. Like going back to study, earning money, having a loving relationship and I'd be so happy, I don't need alot of friends, just a few would be so geat.

    I see, and no I'm not expecting a miricle to happen within weeks, because my health is way to much messed up.
    I think there's alot on misinformation on Vitamin D's dangers at higher doses just like there's much panicking with other Vitamins and the RDA of 600IU is ridiculous. I'd say 5,000IU should be the minimum and 10,000IU optimum (see mercola.com) The next one is experimental at best, but I think I will try out how mega doses of VitD would work out just like this fella who has alot of readers giving him good ratings. I never felt anything on 10.000IU Cholecalciferol. Here's the amazon link to the book, but I haven't read it. Only some promising reviews:

    http://www.amazon.com/Miraculous-Results-Extremely-Sunshine-Experiment/dp/1491243821/ref=sr_1_2?ie=UTF8&qid=1395883517&sr=8-2&keywords=vitamin+d+100000

    No, low dose vitamins don't work in my case, although I like the idea of less pills and tablets, otherwhise I would have taken a good Multivitamin- much easier and cheaper

    I will, this is still my programm at work. I remember Klinghardt using that huge of amount 2wks for a reason, cannot remember though. And also Vitamin A competes with Vitamin D on these receptor sites, so I'll double and triple check that before my final protocol is finished:nerd:

    No I don't think so. Do you have a source for that statement?

    Yes, or even better the injectables like B12. I'll make my own capsules with Thiamin, Riboflavin and Pyridoxin. So if the capsules hold 1000mg, I'll probably try it with 500 B1 and 250mg B2&B6.

    I'll take Pantethine, as Pantothenic Acid needs about 10-times more for the same benefits of the adrenals, brain etc. If enough Riboflavin is there, then the Pyridoxine gets converted easily and quickly to P5P. Incase of Neuropathy, I'll add in 50mg of P5P, supposed to alleviate that. Niacin indeed is a methyl sponge, for overmethylators like I am that is actually beneficial and the reason I take so much is not only that it facilitates detox, but it's also good for you mentaly and the mitochondria.

    I took B3 3x1000mg daily and from time to time my B-Complex with much lower dose B-Vitamins, worked well. Issues arise if one uses only one B-Vitamin, while there is a deficiency in the other - that can lead to issues. But I don't believe that there should be specific ratios, it's an individual thing. For some people my Niacin dose might give an anaphylactic shock while others do fine. There's no one-size fits all, that's why I love Amy Yaskos work, she actually explains why some don't do well on specific supplements, where others do


    Yes as mentioned before, my research tells m the same until I bought 5000mcg Methylcobalamin Ampoules and felt brain foggy and weird in the head. I couldnt explain that, but then I came about that I am an overmethylator with a low tolerance to methyldonorse like Methyl B12, SAMe, TMG, you name it.

    This thing with NO-ONOO I actually didn't get yet and I don't think they'll test for it when I visit the CFS clinic in April.

    This has been bugging me for a while now and I don't know what to do as I'd love the benefits of K2. When my internist made a thorough blood check and the results came in, she told me that I'm in a high thrombosis risk. I have to rethink that. Also one of the most important parts of the protocol for me is the EPO part and this also increases thrombosis risk. Well....I probably go slow on these to and start with modest low doses.

    Well Ubiquinone gets converted to Ubiquinol by the body, but a weak or aged body might not be able to do that. I tried Ubiquinone and it had really no effect at all for me, that's why I switched it for the Ubiqiunol, other AO's are plenty available, I want this mostly for mitochondrial boosting properties, see if it works like it says on the paper.


    My sodium is on the higher range and Iodized salt is not the way to go on orthoidsupplementation. Watch Dr. Brownstein on youtube if you like to get an alternative view on this important nutrient.

    Indeed and I wouldn't put it there if it's not priority part of the treatment. My thyroid will get optimized, it's a part of this protocol (iodine/selenium)


    That Niacin causes liver damage is a hoax (->video). High doses like that of course are not for everyone but it is for me as my diagnosis means I'm an overmethylator, means that I react different to the average person to Niacin and other perfectly fine nutrients make me feel terrible.



    Indeed, by having that mitochondrial disorder, everything in my body works slower, the kidneys included that's for sure. I don't drink alot too for that matter, that's something I feel is different to others who only drink and piss the whole time. I wish I had such well functioning kidneys as they filter so much of the waste.. Hope they check at cfs-clinic


    In theory it is that, but the used up neurotransmitters don't get degraded fast enough and through inhibitory feedback loop new neurotransmitterformation is actually blunted. If I get the chance I'd love to see tests of my neurotransmitter status, but thats also cost alot of money actually. In the future I will have a certain amount of money and on that basis I'll try to figure a best way to invest it in my health. Luckily I get to this cfs clinic soon and they do also many diagnostic things, and I get a clearer picture of what it is I have to take or leave out to get better.

    Diet

    I feel a different energy with foods that has meat or chicken or any other kind of protein and some carbs like rice and especially fats do make me feel better. I don't have a specific diet and don't have the energy to do so.

    My eating is mostly average stuff, like cheese with bread, eggs and lunch I eat fries and fish (fries often do make me feel very good actually, strange that is) also now that my father is here helping me he's cooking good with tasty rice and also meat, beans and sauce. It also makes me feel a little better but often tired also.
    The level of hunger is a little bit less than normal lately.

    Anyway, Leopard man, that was really alot for me to reply to, but I made it :snigger: There might be some missing, but that's the most my brain can produce for now:ninja:
    Last edited: Mar 26, 2014
  2. Martial

    Martial Senior Member

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    NAC causes methyl trapping by taking folate out of cellular development with conjunction of fred's protocol, not sure it has the same effect with a methylation protocol with different co factors though, NAC seems great as a stand alone product, however it's usejust seems contradicted when a person is using certain methylation protocols.
  3. Martial

    Martial Senior Member

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    @amaru7

    I really feel like you really may want to bring your protocol into more normal ranges of supplementation, I have been hearing more and more recently of all kinds of issues stemming from over doing the supplements, plus your body is going to be working so hard to process it all you risk serious kidney and liver damage as a possibility, as well as the fact of whatever possible infection or pathogen could be driving your symptoms will go free reign, since your immune system will shut down in response to constantly trying to process all of the vitamins and minerals you would be putting into your body.

    For very specific purposes things can have their place, I.e. Absorbic Acid C is very practical in halting and reversing tumor growth and can possibly help for cancer, however high levels for someone without cancer and you significantly increase your chance of contracting cancer.. Paradoxical but with proven history accounts, Also if you have a hidden lyme disease infection then high dose vitamin C can seriously speed up neurological symptoms and make for a possible far worsening of the condition of the disease.

    I would just keep everything in moderation and don't ever go too far above the RDV unless you have specific test results with deficiencies severe enough to recommend the adjacent high dose replacement therapies. Just food for thought, I used to over do the doses on my own supplements and got some major side effects as a result!
    rosie26, golden, amaru7 and 2 others like this.
  4. acrosstheveil

    acrosstheveil Senior Member

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    yes, but you stated 200,000 mg in your previous post. which is over 450 lbs. i think it was a typo.
  5. Radio

    Radio *****

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    I feel that Dr. Amy Yasko low dose approach is a better long term strategy for correcting these chronic deficiencies.
    Last edited: Mar 27, 2014
  6. justy

    justy Senior Member

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    Hi, I was wondering if you could clarify your dose of Selenium? it looked like you said 1,200mcg or did you mean 1-200mcg? Just concerned because that is way too much selenium. Selenium does make me feel better if I take it in combination with vit C. BUT high doses are very dangerous and can lead to death.

    I was advised by Dr Myhill to take 100mg 3 x daily for 2 months and then 200mcg a day for a few months and then maintenance dose of 100mcg a day and I can honestly say she is not shy of high dose vitamins and minerals.

    My main concern is your bodies ability to handle this amount of supplements. We are all different, and you probably already know what type you are, unfortunately I am the type that seems to react to nearly everything (even B12 and CO Q10) by becoming super wired. I don't seem to tolerate many supplements at all - which was a big problem when trying to do Myhills protocol.

    I have spent a LOT of money on supplements I cant take and have a whole cupboard full of them. I now actually feel slightly better TAKING NOTHING. I know this is strange, and no matter how much I want to get better I am fed up with getting worse from every little thing I try and then slowly climbing back up again to 'my normal'.

    The other issue I want to raise is the possibility of causing problems with the stomach. I developed pretty severe Gastritis and I feel sure it was from taking a lot of supplements. It took two years on the dreaded PPI'S and a LOT of pain to get my stomach back to more or less normal functioning.

    I think your time frames are realistic - I found I needed to take something for at least 3 months to see if it helped (so long as i didn't have an adverse reaction)

    My advice would be to start slowly - with only a couple at a time to see how you react, and also starting with lower doses and working up. My feeling would be to take a particular approach at a time e.g maybe start with detoxing supps and treatments before moving on to something else like sleep or energy etc. That way you can really see what is happening.

    I wish you all the luck with your protocol.
    Justy.
    amaru7 and Leopardtail like this.
  7. adreno

    adreno 3% neanderthal

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    I agree with what others have said - your doses are way too high for almost every supplement - but you already seem to have decided that this is good for you, so I am not sure what you're really asking in this thread? Are you asking what else you should add on top?
    Last edited: Mar 27, 2014
    Calathea likes this.
  8. Radio

    Radio *****

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    Yes, there are many other issues that can cause problems with the stomach. Please read my thread on this topic.

    H-pylori-Hypochlorhydria-Dysbiosis-Liver-CFS/ME-Connection
    http://forums.phoenixrising.me/inde...dria-dysbiosis-liver-cfs-me-connection.28937/
    amaru7 likes this.
  9. justy

    justy Senior Member

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    Yes I am aware of that

    I am sure mine started after taking lots of supps, especially ascorbic acid and caprylic acid for candida. My stomach is better when I don't take any supplements. I did not have Hpylori on testing more than once.
  10. amaru7

    amaru7 Senior Member

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    Hi, I actually meant up to 1200mcg of selenium. There was a study I read once about how 1200mcg intake was used with no ill effects of toxicity. Other few studies also went up to 2000mcg for cancer patients w/o toxicity. I am convinced that toxicity of Selenium is a rare occurance, not like Dr. House might want us to believe. And I am prepared to put my life at risk, instead of comitting suicide, I want to take a risk. My motto is for the moment "get healthy or die tryin" and that's why I take seemingly dangerous dosages. But most are very safe anyway except for that fat soluble ones and a few minerals. like zinc gluconate only is about 40% elemental, means my real dose would be 60mg of that 150mg and if one counts that the digestive tract only gets a part of the ingested amout..well you make the calculation.

    Thank you for sharing your experience, but mine and basically everbody's reaction to things differ, because of biochemical individuality. Right now at this moment I took 1000mg Niacin as I do occasionally and the flush is great - I know I'm weird but I actually like the flush - and a feel a bit better and less depressed. Other people can get serious trouble at that dose, even if it occurs rarely.

    I'll take a risk at these megadoses and definitly go step by step. I will introduce the supplements one by one (the critical ones at least) and go slow until I reach the final dose to figure out if there are issues, where they arise from. This protocol has been 2 years worth of work for me and I'll keep continuing my research.

    Thanks for your luck wishes justy

    radio has gone on hplyori and hypochloridia, which is very important for adequatly absorbing nutrients, even more than digestive enzymes, probiotics and so on. You might try to fix your gut issues first and then try a second round, maybe you feel better on supplements. btw. did Dr. Myhill give you anything which is missing in my protocol?
    Jon_Tradicionali, golden and Radio like this.
  11. amaru7

    amaru7 Senior Member

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    It's high on the B vitamins and the fat solubles but actually not almost every supplement if you look at it, is a megadose.

    I want to know who had good experiences with one or some of the nutrients in my prot, and what's critical (as mentioned k2/epo for blood clotting risk for example) and as you said what might be worth adding. I mean I looked into many things over my long course of research, but I'm sure there are valuable interventions that I might have missed just like the thing about resistant starch which I got to know about just yesterday from Sushi , thanks for that if you read it! So yeah..thats basically is what I want, work on and expand/improve a little and better unterstand that protocol and the mechanisms.

    What is still lacking with me is the parasite protocol. I'm not sure which is more effective, Dr. Klinghardts way or Hulda Clark natural way with Wormwood, Cloves, any idea on this?.

    Also I want to improve my detox part. Maybe I'll add kelp as some kind of alginate for that and maybe MCP, not sure if it's worth adding though and my reading and asking is going on. At the moment I'm not able to do some serious research because my bandwith is limited and also my concentration, that's another reason for me to ask for helpful members.
    Last edited: Mar 27, 2014
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There is also a third possibility--you could overwhelm your system and become more debilitated. Most of the specialists who treat this disease, do so in steps--1st, deal with this, which will prepare you to deal with that.....etc.

    Sushi
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  13. Martial

    Martial Senior Member

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    Have you ever been tested for underlying major infections, any specific results of viral issues? Checked for Lyme? Possible candida, parasites, or Mold Toxicity?

    It would be very beneficial to check all these things out before jumping on any protocol, like I mentioned before some of the stuff is contridicted like high dose vitamin C for neurological lyme disease. I would have ended up getting a DX of chronic fatigue syndrome but ended up getting the proper testing, and to the right doctors to learn I had the lyme disease, tested through IgeneX. There were a lot of things I could have made worse had I not known I had an active infection, like spend years being sick with a false diagnosis and only get worse as the infection spreads and damages my body. Even things like taking arginine can be contradicted in cases of active viruses, herpes, etc.. It feeds the viruses.

    Do look into every possible underlying infection and see if anything is a possibility, You want to at least know exacty what you are treating before you go into a super heavy protocol like that.

    There are all kinds of various wonderful things you can do to treat lyme, parasites, mold toxins, candida, and other things if those were issues as well.. It is important to go into finding those possibilites as no amount of supplements will treat those infections on their own, you would need a very direct and specific tool to treat these individual things.There is just a lot you can do before trying to jump on doses so high of vitamins that they could potentially kill you. Really working in depth to treat methylation work would serve well, healing the gut, and going after hidden pathogens while removing built up toxicities... Just keep your options man, again I would really advise thinking of keeping the protocol in much lower doses, you can still take everything but in moderation and low and slow approach.. This will be the least possible risk and if you have reactions you can figure out what is causing it and better titer doses between everything from there.
    justy and merylg like this.
  14. tdog333

    tdog333 Senior Member

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    I just wanted to clarify something about the selenium, it is okay to take doses that high but not with regular selenium. It must be with a DIFFERENT kind of selenium than you are thinking of. Regular synthetic selenium is highly toxic at high doses, I really wouldn't even recommend taking over 100mcg of that stuff.

    The version you want is the real selenium, derrived from vegetables like mustard greens, yeast, or some other source like broccoli.
    Here is the one I use:
    Selenium Cruciferate by ecological formulas
    http://www.pureformulas.com/seleniu...Kkg-C5tL0CFYN0Ogod3EYAYQ#sthash.OdKQzeDG.dpbs
    I take 800MCG per day to help restore cell mediated immunity against infections(notably candida).

    I have read several reports by individuals who have cleared up chronic infections alone by supplementing with higher doses of selenium(NOT the synthetic form though)!
    Of course you should discuss this with your DR. Just giving you some information.
    amaru7 and justy like this.
  15. tdog333

    tdog333 Senior Member

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    I decided I wanted to make a couple more comments actually-

    If your determined to take those high doses of niacin look into taking SAMe too. You're going to soak up so many methyl groups with that high of a dose. (although with COMT +/+ its a fine balance)

    With ALA i would start low and slow, it's a chelator that can remove mercury across the BBB as I'm sure you're aware, I would look into a protocol like andy cutlers. If you don't maintain a constant blood supply the mercury will just get dumped into various organs and that's no fun. It's also pretty tough on the body.

    Be aware that that much vitamin D can create a lot of extra dopamine, which will as a result create more norep and epinephrine. Which is gonna suck with a COMT+/+ (I have it too) so i would titrate up if you are determined to go to higher doses. The lithium orotate should help break down those byproducts though.



    I would really recommend starting with each supplement one at a time. I have the biggest urge to just take every supplement in my cabinet and get this all over with, but I've learned the hard way. If you jump into it you don't know when you need to increase the dosages, back down the dosages, or stop a supplement all together. Plus one supplement could make you feel like crap or really good and you'd have no idea which one it was.
    Last edited: Mar 28, 2014
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  16. Calathea

    Calathea Darkness therapy

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    Tell you what I've just started, which might be helpful for you. I'm now keeping a spreadsheet where I fill it in once a month. I have a section at the start for symptoms or conditions, which I grade from 1 to 10, and then colour-coded (the colours for each number are listed at the top, so I know which ones to pick) to make it easier at a glance. After that, I list what I'm taking, including the doses, and with it all divided into sections (prescribed stuff, vitamins, minerals, other, herbs). I think I'll just put in an asterisk or something for the cells where I'm taking something at the same dose as the month before. This way the changes will stand out, rather than its ending up as a wall of numbers. I already keep a daily diary of things like this, but you can't really get a good overview with that. You can see the spreadsheet here, although it goes on past that to the right.

    I hate waiting to try new things as well. Sometimes you're advised to wait three months, and I'm not sticking to four changes a year! But I think I will stick to one or two per month, at least in terms of big changes rather than minor dosage adjustments. This month I added rhodiola and malic acid. I'm dying to try l-tyrosine, co-q10, d-phenylalanine, all sorts of things, but I can't do them all at once. I need to work out whether these two are working for me and tweak how I take themm. Too much malic acid appears to be irritating my bladder, and taking the rhodiola any later than first thing in the morning appears to make the restless leg syndrome worse.

    By the way, many of us have friends and partners with ME, even while severely affected. You don't have to put your entire life on hold.
    Last edited: Mar 28, 2014
  17. xrunner

    xrunner Senior Member

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    My own view is that it is overcomplicated and if you look around closely you won't see any proof that this type of approach works at all in ME. I'd carefully review all of your premises.
    That is from somebody who at some point used to take more supplements than those you listed. I'm of the opinion, based on purely my own experience, that it may make you worse.

    Therefore, I'd ditch it and work around something simpler and proven to work such as the Simplified Methylation Protocol (for supplements) otherwise invest the money in a good doctor with a solid track record i.e. published numbers or references from people you personally know.
    Sushi likes this.
  18. Leopardtail

    Leopardtail Senior Member

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    Another approach might be to take a cluster of supplements that have been proven to work together thus shortening the time slightly. I agree that introducing too much stuff at once is not likely to be a good idea. There would be no way of knowing if one thing were helping and another causing harm.
    amaru7 likes this.
  19. amaru7

    amaru7 Senior Member

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    Low doses of nutrients are good for prevention mostly while high doses are for treatment. Just like Vitamin C for cancer patients is not effective at low ranges. My main issue is mitochondrial insufficiency and therefore my basic aim is to restore them to levels that make my disability better. I've read about mitochondria alot as it has been my main focus all the time and the conclusion that many specialists agree on is that there is no treatment for mito disease and that supplements do prevention For mito decline at best.

    I also believe this to be right tbh. So the supplements I listed are mainly building blocks and for protection I don't expect them to raise ATP to any relevant measure, my only hope basically is that the HGH and EPO could do that in combination with optimizing thyroid as there are few studies that claim they're able to induce mitochondrial biogenesis (creation of new mitos) and as there are no studies on such a combination in relation to ATP I'm aware that outcome will be unknown.

    Left with mitochondrial disorder, it is the only option I see for myself except for staying ill listening to professionals who say inherited mitochondrial insufficiency is incurable. My wish is to disprove that consensus. I like Dr. Teitelbaums theories, but I believe that his treatment is not effective enough for mitochondrial disorders. Also I like Dr. Myhill and agree on many things she says and she's honest enough to say this to make patient expectancy realistic,
    http://drmyhill.co.uk/wiki/How_Long_Before_I_Recover?
    But again she doesn't use HGH, so I will have to see if this works out as it is my main hope in this protocol for my mitochondria.

    Otherwise,
    I will just have to die a heavily disabled man without having ever gotten all the wonderful joys of life, really i'm not willing to give that all up yet, at least not before I have failed with this deadly combination last try- protocol.

    As for the others Thanks for your opinions, but I'm not able to answer them all individually right now.

    Kind regards, amaru7
    Last edited: Apr 18, 2014
  20. amaru7

    amaru7 Senior Member

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    Of course I'm not planning to introduce them all at once, I'm not crazy.. I'll start with the save ones I tried first like B12 B3, ribose HGH etc and then add the rest one at a time building up on it to rule out negative effects.
    Last edited: Apr 18, 2014

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