Lets start with the obvious question: are you expecting doing all this at once to lead to rapid recovery?
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.
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.
I see, and no I'm not expecting a miricle to happen within weeks, because my health is way to much messed up.
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.
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
Have you considered using a vitamin mixture made for ME, and working from there (this would produce significant lowering of cost.
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 would double check the Retinol before taking high doses.
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
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.
No I don't think so. Do you have a source for that statement?
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.
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.
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
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
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.
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.
K2 is controversial for ME due to issues with blood clotting.
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.
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).
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.
If you also have low Sodium, iodized salt might be a better option.
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.
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.
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)
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.
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.
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.
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
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.
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
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
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
There might be some missing, but that's the most my brain can produce for now
