I Haz Brain Ache

With regards to Dr Myhill’s CFS protocol  I have been comparing the levels of nutrients to try and decide on which will be the most cost effective, and beneficial for me to take.

I know the same dilemma is going to affect anyone who tries the protocol, because we all take other stuff already, and most people have limited supplies of money.

I looked at the high strength vitamin and mineral supplements I already take, and directly compared them to Dr T’s Energy Revitalisation System, which in the UK costs £35 – £39 for approx a month’s supply,and also to Dr Myhill’s Multi-Mineral-Mix, which I had to work out as the info on the website is per gram of the powder, and the dosage is 1 gram of powder per 2 stone of body weight, up to a max of 5 grams. The powder costs £19.80 plus P&P costs for 405 grams.

My multivits and minerals cost me £10 for 3 months supply from Asda, as they have an almost permenant special offer on of 3 for a tenner. Individual packs are around £5 each.

In brief, to summarize – Dr Myhill’s powder contains twice as much of many of the mineral’s in Dr T’s energy powder, and some even more than double the levels, and it will last for longer, which makes it a better buy. BUT, it does NOT contain any of the amino acids that Dr T’s does. Nor does it contain the wide variety of vitamins of Dr T’s energy powder.

Dr T’s energy powder contains much higher levels of MOST of the vitamins in my normal supplement, but it DOES NOT contain as wide a range.

Co-Enzyme Q10, D-Ribose and L-Carnitine all have to be bought separately, no matter which one I decide on. And none of them are cheap.

D-ribose varies greatly in price. The cheapest I have found is £16 for 250grams – daily intake of 12.5grams – so that gives me a supply for 20 days.

My Co-Q10 is £24 for 3 months supply

L-Carnitine is (cheapest I have found) £11 for a bottle of 60 capsules, 1gram per capsule, dose of 2 capsules per day, gives me one months supply.

Total cost for those 3 alone is roughly £33 per month *sigh*

So, here’s what I have decided to do. I am going to check into toxic levels of the vitamins in my usual supplement, and if it is possible, I am simply going to double up on that one, so take 2 tabs a day instead of 1.

This will give me a more comprehensive spread of vitamins and minerals in levels much closer to the recommended ones, and I am going to put my money towards the L-Carnitine and D-ribose.

My sleep herbs etc are going to cost me approx £15 a month.

I looked at the cost of the mitochondrial tests on Dr Myhill’s website, and I can’t afford them. Simple as that. Plus due to the increased demand since the book came out, Dr Myhill has had to restrict access to her services as she is overwhelmed.

I tried to book a long appointment with my GP, so I could discuss the book with her, and the earliest date I was given was the very end of August. 4 Weeks away ffs!! Instead I have booked a telephone consultation with her next Tuesday. It’s not the same as face to face, but it’s better than nothing. If that fails…..I will have to rethink.

So, yeah, I have Brain Ache!!!

But you know what, the way I see it – nothing worth having is ever easy. If you want something badly enough, you make sacrifices. And with the new hope that this protocol gives me, I would be really stupid to not try. I would be letting myself and my family down.

I can be a right stubborn old boot at times, and for the foreseeable future I just need to get stubborn about this 😀

 

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19 Responses to I Haz Brain Ache

  1. Hope you can modify or find adaptations that work
    Good idea to have the phone consultation. Can you compose an email to your GP concerning the topic/what you hope to gain from the call? Emailing ahead of time saves discussion time and gives the GP an opportunity to do some reading/research ahead of time if necessary

    Like

    • Moongazer says:

      I don’t have an email addy for her. But apart from this issue with the sleeping pills she’s very good. In fact after I requested a vit d test a few years ago and they saw how low mine was they now routinely test for it. They took a closer interest in fibromyalgia too so I am hoping they’ll listen this time too.

      Liked by 1 person

  2. Linda says:

    I hope you find something that works for you…good luck! 🙂

    Liked by 1 person

  3. Trisha says:

    All these numbers, amounts and all that give me brain ache too! I’m still only about 35% of the way into the book so I haven’t started calculating price but I’m already thinking that D-ribose and L-Carnitine are the things I definitely should try. I might pick up a package of Dr. T’s vitamin powder this weekend, just because I can get it at a local store.

    It’s a shame the tests cost so much. Without knowing the cost, I already figured I wouldn’t be able to get them, because I don’t have a doctor that will order them. I guess our symptoms tell us that we have mitochrondrial dysfunction so we can just go with that!

    Liked by 1 person

    • Moongazer says:

      I wasn’t expecting the tests to be as expensive as they are ( £560). I agree with you on our symptoms, its just I thought it’d be evidence for our usual doctors if they saw the test results. But it’s way out my price range.
      I think we all seem to be heading for the 3 basic ones – d ribose, l-carnitine and co-q10 🙂

      Liked by 1 person

  4. I finished the book late last night. I’m going to start going through it again today slower and taking notes of everything I need to do. I’m hoping I can double my multi vitamin (it doesn’t contain any minerals) which should be cheap to do and buy the multi mineral powder. By getting the multi mineral powder I will be able to stop taking four of my tablets- calcium, magnesium, D3 and B12 so hopefully that should cover the price. I’ve already recently started on CoQ10 and L-Cartinine so those are built into my budget but might need to up my L-Cartinine dose and then I just have to find some affordable D-Ribose. I’m lucky in that I have some savings and I believe in the science behind this enough that I’m willing to use up those savings. By my best guesses the savings will cover at least the first 12 months. The one thing I won’t be doing is the diet. I’m going to do a post on the protocol but in brief- my history with eating disorder makes any restrictive diet extremely risky and I would rather continue with CFS than relapse with my eating disorder.

    Liked by 1 person

    • Moongazer says:

      The diet is the hardest part (as well as sleep) but I think cutting out as much refined sugar as possible and going higher protein/lower carbs will help our cells. It might take longer for those of us who cant do the paleo diet but I’m with you on the science behind it 🙂
      I need a minimum of 3000iu of D3 a day just to maintain my levels at the lowest of the normal band so I’d still need separate pills. My multi vit has 800% of the RDA of B12 anyway.
      I already do 1 or 2 grams of vitamin C at night from the iodine therapy although I have been terribly hit and miss with the iodine itself 😦
      There is such a lot to think about! But we’ll get there 🙂

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      • Yeah I am expecting it to take longer if I don’t do the diet, but I will try and adjust my diet as much as I can without being restrictive. I’m going through the book again now and making a list of everything I need to do. Then I’m going to make a plan of supplements then I’m going to buy all the supplements I need (I’m dreading the start up price but hopefully won’t be too bad). The sleep wasn’t too bad for me last night. I got to sleep by 10pm. The waking up was difficult though. I ended up sleeping through until 1pm so the afternoon nap won’t be happening. I’ll try again tomorrow 🙂

        Liked by 1 person

        • Moongazer says:

          I have already ordered the d-ribose powder and L-carnitine, but next month is going to be a humdinger cost wise as I will need more Co-Q10, and although the bottle lasts 3 months, it’s still £24 😦
          We got up at about the same time today LOL. I got to sleep at about midnight, then at 2.30am I was like “ching!!!” wide awake O_o I saw 5am, then fell asleep again. My Eldest, bless her, woke me at about 10.30 with beetroot, apple and blackcurrant juice (for the blood presure LOL) and made sure I took my pain meds, but I wasn’t able to stay awake.
          I do feel like I slept though, which is a miracle, as usually it doesn’t matter how long I am ‘unconscious’ for, I still wake up feeling like I havent slept. Then the nights when I only get 2-3 hours, I feel ill on top of exhausted. It’s a constant battle, isn’t it.
          I know one thing tho, I haven’t felt this much hope in a very long time. ((((hugs))))

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          • I’m the same. Hope is a great thing 🙂 I just had my first detox bath (though without Epsom salts which I will get soon). Hotter than my usual bath but hopefully it will help 🙂

            Liked by 1 person

          • Moongazer says:

            Oh I do still miss my long hot baths 😦 The detox part is going to be tricky for me. I have a shower room, so no bathtub, and I can’t do the infrared saunas due to being asthmatic (they are expensive too). They were recommended by the rheumatologist who confirmed my FM diagnosis and I looked into them back then. BUT, I did note what Dr M said about the washing off part being really important, so instead of a daily wash of just the important bits, I am aiming for a twice daily full ‘wash off’ LOL.

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          • Maybe you could borrow a family members bath tub once a week? I went to a spa once that had an aromatherapy steam room and I wish I had that to detox with. The tricky bit for me is quitting smoking. I started during the worst of my eating disorder because I heard it reduces appetite and I’ve been addicted ever since. Tomorrow I have my first stop smoking hypnotherapy session though. It is are expensive but cheaper than smoking for the next 40 years and hopefully with the money I save, I will be able to afford the supplements more easily. I wish they were available on the nhs 🙂

            Liked by 1 person

          • Moongazer says:

            I’ve been looking at Dr M’s website for more info on the infrared thing and she recommends Firzone home units. They are the best part of £200 tho 😦 But it would be a way around the steam issue affecting my asthma. I doubt the little lamps would be effective enough, which is a shame coz I could afford one of them LOL

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          • Ouch that’s a lot of money! I hope you find a way round it x

            Liked by 1 person

          • Anything sweat inducing should work so you could try getting under a duvet with 10 or so hot water bottles?

            Liked by 1 person

          • Moongazer says:

            I could do.
            My daughter just laughed at me when I showed her the company’s website 😦

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  5. Moongazer says:

    Hmmmm…..there’s a thought….borrowing a bathtub 🙂 Thank you for that 🙂
    I gave up smoking over a year ago by vaping. I am still addicted to nicotine but I have reduced that from 30mg juices to 18mg. There is a ‘new’ style battery available that will help me reduce to 6mg quite quickly but I wont be able to afford it for a couple of months now. Vaping works out a lot cheaper – about £12 a month once you have the kit. I am currently on banoffee ice cream flavour lol.
    Good luck with the hypnotherapy. I’m sure that’ll work out cheaper in the long run and be a lot faster than my gradual reduction 🙂

    Like

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