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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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    Hello,

    Introduction
    I did alot of research for now I have a treatment protocoll, which I plan to start when I get the money from my family. I made alot of testing and soon I'm going to a specialized CFS-clinic making even more diagnosis. The most significant finding is that I'm homozygous for COMT v158 ++ and my ATP is extremely low with 0.25nmol/l where good energy supply is everything above 1nmol/l. My potassium has always came out in the low end of the normal range erythrocytes aswell. HGH and IGF-1 always has been very low. I've been suffering with ME for over 15 years and just for the last two years I've been focussing/ researching this stuff and planning a protocol for the near future..
    I'll keep updating this post incase I forgot something or I have new tests done.


    Symptoms
    Social: I'm single and have no friends. My interaction ability with people is diminished, I can't resonate enough, lough, cry feel the emotional exchange and the "heat" socializing with ppl and really miss it so much. Basically I feel numb, almost like dead-autistic in a lifely situation when everybody's having fun, I feel disconnected and quickly exhausted.
    Sleep: My sleep pattern is disrupted, I sleep 8-14hours and I'm often wide awake at night. The sleep quality is bad mostly, I rarely get to dream.
    Cognitive: I'm not able to read a book or focus too long on anything, my memory is terrible, feels like almost amnesia.
    Occupation: I was not able to finish my studying or work, plenty of attemts of work/study failed with me. I have no energy not even part time. Disability going.


    Protocol
    Now behind every substance there is plenty of research, I just cannot put it all in, because it would be too many pages and I just lack the energy to do so. Here's the substances, dosages left out where I'm not decided yet, probably taking no mega dose, just the standard dose. Disclaimer: Some of these dosages are so high (no I'm not), it might be disturbing to some:thumbsup:
    • Vitamin A (retinol) [25.000IU up to 300.000IU for 2wks]
    • Vitamin D (cholecalciferol) [5.000IU up to 100.000IU]
    • Vitamin E (Mixed Tocopherols& Tocotrienols)
    • Thiamin&Benfothiamin (B1) [250mg up to 1000mg]
    • Riboflavin (B2) [250mg]
    • Niacin (B3) [up to 5.000mg --> Niacin Detox cocktail ]
    • Pantethine (B5) [up to 900mg]
    • Pyridoxine[250mg] & P5P[50mg] (B6)
    • L-Methylfolate (B9) [1mg]
    • Hydroxycobalamin (B12) [up to 10mg --> brain detoxification; NO scavenger]
    • Ascorbic Acid (Vitamin C) [2g-6g]
    • Biotin [5.000µg]
    • Alpha Lipoic Acid [600mg 1-3x]
    • D-Ribose [3x 5g]
    • N-Acetyl-Tyrosine
    • N-Acetyl-Cystein [600mg 1-3x]
    • Acetyl-L-Carnitine [1g]
    • Fish Oil [1g; 500DHA, 250EPA]
    • Borage Oil
    • Probiotic VSL #3 [450 billion CFU]
    • Ubiquinol (CoQ10) [100mg-300mg --> expensive!]
    • Menatetrenone (Vitamin K2) [up to 3x 15mg daily --> expensive]
    • Iodine [up to 50mg of KI]
    • Selenium [up to 1.200mcg]
    • Tri-Boron [3mg]
    • Lithium Orotate [5mg 1-2x]
    • Zinc [150mg --> KPU!]
    • Magnesium
    • Manganese
    • Molybdenum
    • Human Growth Hormone (HGH)
    • Erythropoietin (EPO)
    • Low Dose Naltrexone (LDN) 1mg-4.5mg
    • Parasite Cleanse: Either with Black Wormwood/Cloves or Dr. Klinghard way
    • Detoxification support: FIR Sauna ; activated charcoal, megadose Niacin ]
    I know it is a kind of overkill, but I'm willing to try and see if such a treatment can really restore my health and life back even if it is a hit and miss more or less. As right now this ain't a life that I lead and my biggest wish is to regain my health because health is life one only appreciates if one loses it.
    Last edited: Mar 26, 2014
  2. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Zogor-Ndreaj, Shkodër, Albania
    I understand and am looking to go the overkill way as well.

    200,000g VitC per day for 3 days. The protocol which cured polio.

    Keep us posted man. Your life seems to have ended up like many of us on here.
    amaru7 and golden like this.
  3. barbc56

    barbc56 Senior Member

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    I simply have to reply here as there is no credible scientific evidence that vitamin C can cure polio.

    While I think what people take is their own business, I would certainly hope no one would forego a polio shot because they think vitamin C will cure it.

    I have some studies/information about some of the claims about vitamin C and will post them tomorrow as its rather late.

    I just want to show the other side of the story as information from all sides helps people make an informed decision.

    However since this thread is under general treatment, I feel its important to respond whereas I wouldn't find this as worrisome nor respond to it if it were on one of the alternative forums where this thread might be more compatible?

    But this just my opinion so please do not take it personally as I want to show other information and not to diss individuals.

    Barb
    Last edited: Mar 23, 2014
    Soundthealarm21 likes this.
  4. amaru7

    amaru7 Senior Member

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    Neither do I have polio nor am I planing to take that large of a Vitamin C dosage. Jon_tradicionali: What is your protocol and how would you comment to mine? What would you change/remove? I'd be happy to hear opinions on my big protocol and what experiences there are with some of the substances.
    amaru
  5. barbc56

    barbc56 Senior Member

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    I probably should clarify. There was another thread that mentioned vitamin C cured polio, so my post was more of a general statement and not at you or jon.

    It might be prudent and more productive if I startto a thread about this topic as I was a bit OT.:love:
    Take care. :)

    Barb
  6. Martial

    Martial Senior Member

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    Everything looks pretty solid but I would be hesitant with alpha lipoic acid, do you or have you ever had mercury fillings or eaten a lot of sea fish? If you have a high methyl mercury load then the ALA can chelate it out of the body.. Normally this is a good thing if you follow a proper chelation protocol.. However using ALA the wrong way and you will move mercury into your brain...

    For the Methylation supplements it may be more benificial to switch hydroxy to methyl b12. Also NAC is a methyl trap so I would avoid it if I were you. A proper methylation protocol will help restore the way your body has glutathione naturally and without needing a supplemental approach of it, supplemental glutathione pre cursors or glutathione supplements are also methyl traps, as well as folic acid.

    What is the HGH for? that is something I would be hesitant with, how old are you? Did you ever get your hormones tested recently, whats the range?

    You have some pretty damn high doses with those supplements I would be careful as overdoing the doses can lead to cancer which many studies show using excessive vitamins way above RDV, bar certain things like water soluble b vitamins which do not last in the body as long.. Always try to get the bio available forms and never use synthetic vitamins if possible.. I would switch out the absorbic acid Vitamin C for ester C or liposomal vitamin C seems much better in the long run, not as harsh on the body and better utilized.

    You take a LOT of copper antagonistic mineral supplements, they are all very useful but be aware of your copper levels and use supplementation of copper or eat high copper foods if necessary, especially at the higher doses like Zinc honestly you might throw off your mineral balances with doses like that as well, comparative to the others. When you use high doses of any vitamin or mineral there are a lot of interactions and other things that can happen, for another example ALA can raise levels of Zinc, and Copper in the blood because it prevents excretion.. Have you looked into all these supplements and made sure there are no issues like that, being fully aware of all the interactions and things to watch for?

    Now as far as being sick what are your symptoms in the body? its important to look and see if your issues are from something that would need specific treatment. Lyme disease, or Mycotoxicity from Mold exposure will not clear out until you approach it with a specific protocol for example. Parasites too but you already mentioned that. Among some other things..

    Over all I think its relatively a good protocol though a bit high in certain doses and DAMN SO EXPENSIVE, how the hell do you afford all this?! Lol

    Anyways hope this all helps!
    amaru7 and NilaJones like this.
  7. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Those are a lot of things, but low dose naltrexone looks like the most promising in improving your condition. I hope you get better! I got a lot of empathy to your psycho-social problems...

    I have tried some of those and most of them did not make a positive difference. Probably taking all of these WOULD make a difference. I have to try VSL3 again, but wasn´t impressed two years ago. And it has dairy!!

    ALCAR improved my neurological function, I recommend that supplement. Either melatonin or ginkgo (better as melatonin can give hangiver) will give you dreams again. Sometimes I feel like Ginkgo makes sleep slightly more refreshing.
  8. girlfromeurope

    girlfromeurope Senior Member

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    Why such high doses of b vitamins? The methylfolate and b12 doses look okay but everything needs to be in balance with b vitamins.
    5000 mg of niacin seems like an awful lot.
    And high doses of vitamin b6 can be dangerous.
    It's your choice but I think you will be better off with lower doses.
  9. Leopardtail

    Leopardtail Senior Member

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    Lets start with the obvious question: are you expecting doing all this at once to lead to rapid recovery?
    Attempting to do too much too fast with ME/CFS can cause a healing shock - meaning you feel like hell because chain reactions set off in the body. This can cause a relapse. You have had ME or a long time, for every cell in your body to recover will take time - count on having to sustain at least some of these things for many months. You can't expect to re-generate a whole body in a few weeks.

    There are very few exceptions to this general rule: start at very low doses; increase very slowly, stay low.

    I have edited comments on individual items below, and a more general recommendation at the end.

    All of these items are fantastic in the right dose, and potentially very toxic in very high doses.
    The top dose of Vitamin D could do severe harm. I would be more inclined to start at 5,000IU and stay there or lower. unless you have dangerously low levels of Vit D.
    Have you considered using a vitamin mixture made for ME, and working from there (this would produce significant lowering of cost.

    I would double check the Retinol before taking high doses.
    Very high doses of any B-Vitamin can be toxic long term. You also don't want your natural enzymes to 'shut down', be clear how long you are going to use high doses and why.

    Keeping a correct balance of the various B-Vitamins matters. Check a good quality B-complex and use similar proportions of the B-Vitamins. Possibly exceptions B9 & B12.

    Sublingual forms of active B-Vitamins tend to work better due to action of stomach acid and intestines.

    B2 & B5

    Keep the B2 and B5 doses equal. I would go for more P5P and more R5P in three doses (e.g. 25-30mg x3) rather than large amounts of 'inactive forms' but do keep some inactive forms in the mix. You are likely to need these for quite some time.

    Niacin creates very high Methyl demands. Of B3's processed forms the NAD form is used in most of the cell, NADH is used in the energy generators (Mitochdonria). Be careful you take a correct balance of these or you could cause trouble. They don't react well to stomach acid, so must be sublingual

    B12

    Adenosylcobalamin (aka Cobamide) and MethylCobalamin have a much better reputation for producing improvement.

    While ALA can lower Methylation (as another reviewer indicated) it is need to produce Glutathione so the right combination seem sensible. Hydroxo however is beneficial under some circumstances. I would strongly recommend you check RVK's work on this issue and his comments on high dose Hydroxo.

    Whether we have (high NO and high NOO) or (low NO and high NOO) is far from certain hence I would recommend care unless you have conclusively proven high NO not just high ONOO. Too little AdoB12 or BH4 can produce high ONOO with low NO.

    Methylfolate requires a slightly higher dose of Methylcobalamin.
    You need 4x more AdoB12 than MethylB12.
    K2 is controversial for ME due to issues with blood clotting.
    CoQ10 is used for two purposes in ME. Ubiquinone (cheaper) is equally effective as an antioxidant. Ubiquinonol however might be better for energy generation but you don't want to waste it as an antioxidant.
    You might want to consider staring with Ubiquinone as antioxidant then introducing some Ubiquinonol for energy generation (never take two version of the same vitamin in the same time of day, you may waste the expensive one).
    If you also have low Sodium, iodized salt might be a better option.

    You can get AdoB12 with boron added. Low boron is area specific like chalk in water, be sure your drinking water has low boron before supplementing.
    HGH is very expensive, I would not do this until you have tried the basics. Are your levels of Thyroid hormones (T4 & T3) not just normal but optimal? What doctors call normal is far from healthy.

    Niacin can severely deplete Methylation if doses are too high. I would not do this without simultaneously raising Methylation or you could cause liver damage. You should also be using Alpha Lipoic Acid & Milk thistle extract while doing this. The milk thistle may be an idea for a good few months while you body recovers you will stress your liver. I have been told LDN combines well with ALA but have not read the science.

    If you take high dose Niacin monitoring by a doctor is a must. They will likely advise you against it, but if you insist on proceeding, likely will monitor for you.
    General comments

    You have grouped these items by 'nutrient type'. Instead try grouping them by 'purpose' that way you can comprehensively deal with one problem at once.

    Introducing so many things at once would mean that one thing cancels the effect of another (e.g. Methylation and ALA+Niacin+Hydroxo).

    First step (stay safe)

    The information you gave me in chat needs to be in this page so that the community have full information to advise you. You said (earlier) you don't urinate much. Trying drink LOTS of water and see if that increases. Boiled & chilled tap water reduces most of the chemicals in it. Expelling all the by-products of this stuff form you body will put major demand on your livers and kidney's if you get water retention when drinking lots of water if may indicate your kidneys cannot handle all this stuff. Kidney problems can also make you VERY ill.

    Known Problems

    You know you have some issues with Zinc/Postassium/Magnesium deal with those first and see where you stand. I would recommend that Aspartate forms of Potassium and Magnesium since they get not just into cells but into Mitochondria and you can get a balanced mix in one pill. Take Zinc and Mg at different times of day, they compete for absorbtion. Never take Mg without Zinc unless you tests tell you otherwise - Mg causes loss of Zinc.

    You know you have issues with energy generation, do those next. You should also consider Mg Malate (in addition to the above) - it can also get into Mitochondria and the 'Malate' is vital to energy generation. Try a 'test protocol' first then extend it as needed many examples one of which here.

    You know you have a COMT mutation, do not cause your body to produce more Neurotransmitters than your body can handle. Have blood tests been done for Serotonin, Dopamine, Epinephrine & Noepinephrine? In Germany you can get St John's Wort free on prescription which improves levels of many of them. Your mood issues suggest they are out of balance as does your sleep. The symptoms of too much or too little of a single Neurotransmitter can have some overlap.

    Diet

    Obvious question, what is your level of hunger like? What gives you best energy diet wise (e.g. more meat less carbs, less carbs more meat). What is your diet like?
    Do you get symptoms between meals that improve when you eat? Do you get symptoms straight after eating?

    Leo
    Last edited: Mar 23, 2014
  10. xchocoholic

    xchocoholic Senior Member

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    I'd suggest you take a look at Dr Terry Wahls story. She said that she attempted recovering from ms via supplements before realizing the benefits of eating whole foods.

    I was sick 24/7 from 1990 (accute onset viral + possible flouroquinolones) - mid 2005 until going on the elimination diet. Most of my symptoms, ataxia, etc were from foods, esp gluten.

    Now Imho, I'm dealing with the reprocutions of eating gluten, etc for 15 1/2 years after getting cfs. I'm a celiac with the DQ2 gene.

    Good luck. x
    Last edited: Mar 24, 2014
  11. acrosstheveil

    acrosstheveil Senior Member

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    i dont think anyone here is going to take over 450 POUNDS of vitamin c a day....even if it cured polio!


    simply impossible..if not dangerous
    barbc56 likes this.
  12. barbc56

    barbc56 Senior Member

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    Now that's what I call a mega dose! :woot:

    Barb
  13. amaru7

    amaru7 Senior Member

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    @xchocoholic : I know her book and video "Minding my mitochondria" I don't believe it's only the food that kept her from staying in the wheelchair, but the combination of supplements and the right food. I want to take in good food with that protocol of course. When did CFS hit you by the way?

    @acrosstheveil No, it's actually very possible and has been used for cancer treatment in some places. Of course the talk is of i.v. and not oral intake :)

    Edit: 200.000mg of course and not 450pounds ;)
    Last edited: Mar 26, 2014
    Jon_Tradicionali likes this.
  14. Calathea

    Calathea Darkness therapy

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    Yes, but 450lb is over three times my weight. That must be an error. 450g, perhaps? That's a megadose, but sounds physically possible at least. Apart from the massive diarrhoea you'd get...

    This sounds like a very heavy supplement protocol to me, both in terms of all the things included and in terms of dosages, many of which are dangerously high. 150mg zinc?! I'm on a mineral supplement with 20mg of OptiZinc, and when I tried doubling that, I threw up. You could get side effects, in fact at those doses you will, and you won't know what's having what effect. Plus you could probably use the money for something more useful, like perhaps paying a personal assistant to help with home care and wheelchair trips out into the sunshine, or taxis to meet up with a friend somewhere quiet.

    Why don't you rewrite this, in groups according to purpose as someone suggested, and try to figure out a bare minimum (say a fifth of your current list) of uncontroversial stuff at uncontroversial doses? Then make more lists of things to try, either one by one, or in groups if they go together (e.g. high dose B12 with folate).
    justy likes this.
  15. amaru7

    amaru7 Senior Member

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    Thanks, it was a really good reply and you hit on many specific points, you really read and thought about my protocol, happy to hear from you
    Last edited: Mar 26, 2014
  16. xchocoholic

    xchocoholic Senior Member

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    You could ask Dr Wahls what she thinks helped her the most. Or you could google paleo diet to find all the stories from those who've experienced relief from their symptoms.

    I re-worded my above post to include my onset date. I really need to get better info in my profile.
  17. Leopardtail

    Leopardtail Senior Member

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    Martial,

    I thought NAC was a methyl sink (causes use of) rather than a Methyl trap (causes failure to use and dumping). Please explain this - it's role as a Methyl trap is its new to me (other than it's indirect effect via Glutathione).

    L.
  18. amaru7

    amaru7 Senior Member

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    Of course not, but 200.000mg are not 450pounds, it's even less than 1/2 a pound. Only indication is it's i.v. use as an alternative cancer treatment. Can go all the way up to 450.000mg with no adverse effects except some nausea, cancer patients can have a look into it, seems successful with some more than chemo. Still le's stay ontopic for now. I'm looking for my ME/CFS treatment and this will be not a part of it.
  19. amaru7

    amaru7 Senior Member

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    I'm not sure if LDN is gonna make it to the final protocol, because I have a genetic polymorphism (COMT) that makes me slower at degredating catecholamines and I dunno how my body will metabolize and react to the increased opoids. Plus it needs prescription. But I'm still open to give it a try as I heard some positive aswell as negative reports on it.
    I tried ALCAR but not long enough so I had no effects positive or negative which was to be expected. But it has so many papers behind it, that I'll give it another try including ALA, which is supposed to potentiate it's effectiveness by far..
    As for Melatonin, I have a 3mg bottle somewhere, might have to look for it though.
  20. amaru7

    amaru7 Senior Member

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    I tried lower dose like a B-Complex product with active forms, but they didn't do anything to my severe case except turning my urine into neon. As I said sometimes one needs higher doses to treat, just like cancer needs an extremely high looking dose of i.v. VitC. Lower doses could prevent but not treat the illness.
    Psychiatrist Dr. Abraham Hoffer (R.I.P.) used 3x 1000mg of Niacin for serverely mentally ill patients with success, some even went back to work and one patient of him even studied medicine with this treatment alone!. A 50mg or 100mg wouldn't do sh** there. - So yes I think in severe cases the doses should fit accordingly.

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