The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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D-Ribose - can excessive use cause determental Amyloid proteins in the brain?

Discussion in 'General Treatment' started by Bansaw, Sep 8, 2014.

  1. Bansaw

    Bansaw Senior Member

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    I'm just about to start a D-Ribose supplement. Dr.Tietlebaum reccommends 5000mg three times a day for 21 days, then backing off.
    But I read elsewhere there is a caution against D-Ribose "rapid glycation" which causes amyloid-like aggregations.

    Anyone got any comments about this? Does anyone, anywhere know a safe dose of Ribose that does not invoke this rapid glycation?

    (Ps: I am also taking Aceytl L-Carnitine which is supposed to prevent the build up of plaque (amyloids) ) !
     
    Last edited: Sep 8, 2014
  2. halcyon

    halcyon Senior Member

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    I haven't read that about D-ribose, where did you see that?

    It seems like all of the dose recommendations I've seen from Teitelbaum have been extremely high. I tried 5g of D-ribose once and it made me feel extremely uncomfortable. I'd try starting with 3g bid first and work your way up if you don't have any problems.
     
  3. Mary

    Mary Senior Member

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    I've taken d-ribose for many years with no problems. I don't know anything about rapid glycation or amyloid-like aggregations.

    5000 mg. 3 times a day is 3 teaspoons a day. I've taken this before with no problem, and it did help with energy. Sarah Myhill says if you add it to your coffee it potentiates its effect.
     
  4. Bansaw

    Bansaw Senior Member

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    Here's the report:
    http://www.ncbi.nlm.nih.gov/pubmed/19216769

    Do you take Aceytl L-Carnitine as well?
     
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  5. Mary

    Mary Senior Member

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    Okay - I read the above article, and in trying to understand it and how it would affect us in the real world, found this article: http://www.lifeextensionretail.com/MagazineArticleDetail.aspx?article=119989

    Here's an excerpt:

    So it appears your fears are groundless - at least I hope they are! Again, I've been taking d-ribose for 7 years at varying doses (between 1 - 3 tsp. a day) and have had no ill effects. I've slacked off in recent months and have been thinking I should increase my dose back to the 3 tsp. a day.

    I have taken acetyl-l-carnitine in the past, but have been taking carnitine fumarate the last couple of years at Freddd's recommendation (part of his B12 protocol). But you're right about the brain protective function of acetyl-l-carnitine. I've read it can help with Alzheimer's and just improve brain functioning.
     
  6. Bansaw

    Bansaw Senior Member

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    Thanks for finding that and posting it for me. Appreciate it. Gives me some reassurance.

    Are you finding the Carnitine Fumarate is better than the Acetyl L-Carnitine? In what way?
     
  7. Mary

    Mary Senior Member

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    I'm not finding it better per se. I'm taking the carnitine fumarate because it is what Freddd recommends on his B12 protocol and part of that protocol - methyfolate - helped me a lot. He's done a ton of research so I respect his opinions.

    I don't feel any differently on the carnitine fumarate than I did with other forms of carnitine and I don't know why Freddd recommends it (it would probably be good to know, I just haven't bothered)

    I have been taking carnitine in one of 3 forms for 12 yeasr now - l-carnitine, acetyl-l-carnitine and carnitine fumarate. When I first took l-carnitine (2,000 mg. a day) 12 years ago, I had a wonderful increase in energy and didn't crash - it was fabulous - but unfortunately only lasted a week or 10 days. And no matter what form of carnitine I take, that hasn't happened again. However, I think I feel worse without some form of carnitine so I keep taking it, and if I wasn't taking the carnitine fumarate, I would probably be taking the acetyl-l-carnitine because of its effect on the brain.

    If you haven't already, I highly recommend checking out Freddd's B12 protocol: http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

    BTW, with the d-ribose, I noticed an increase in energy almost immediately. And if you're concerned about the dose, just go slower.
     
  8. Tired of being sick

    Tired of being sick Senior Member

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    The way I see things are I already feel like death warmed over so taking what could or could not help is a no brainer,even with a very tiny % of could....
     
  9. Mary

    Mary Senior Member

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    Have you tried d-ribose and Freddd's B12 protocol? Both made a big difference for me (though I still have PEM)

    One more thing - a chiropractor who does muscle testing helped me a lot, found my weak adrenals very quickly and helped me recover using an adrenal glandular. I was very weak and tired before taking Drenatrophin PMG by Standard Process - just some ideas -

    Mary
     
  10. Bansaw

    Bansaw Senior Member

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    Drenatrophin PMG by Standard Process

    Standard Process are about the best supplement company there is out there according to my doc. Quality, but a little pricey too. I tried their Adrenal Desiccated and Drennamin too but to no avail. (There stuff always seems to contain Bovine .... a lot of them contain Bovine Orchic extract. )
    But their Zypan has done me a world of good. Its really helped heal my gut. And healing the gut is the number one thing you should take care of before anything else.
     
  11. Mary

    Mary Senior Member

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    You're right - if your gut is not working properly, then all the supplements in the world won't make any difference. My chiropractor was invaluable in helping me with this. He told me I had to straighten out my digestion first, primarily using SP products - they are very good, a little pricey but not bad, and you generally don't take them for extended periods of time.

    I also ended up doing a liver detox under the supervision of my chiro and it helped very much. At the time one glass of wine would leave me feeling sick for an entire day and 2 glasses would make me sick for 2 or 3 days. My liver was overloaded with toxins (I think originally from a job I had where I had heavy exposure to chemical solvents). After the detox and taking milk thistle my digestion was 95% better. I also had to start taking hydrochloric acid with meals - very important. And I can now tolerate a couple of glasses of wine with no problem.

    I'd recommend anyone with intractable health problems to give muscle testing a try. It's a lot cheaper than regular doctors and often can pick up what they miss.
     
  12. Bansaw

    Bansaw Senior Member

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    What liver detox protocol did you follow? I might ask my doctor about that. Her first thought was that my liver was toxic. Did your doc not recommend Zypan? Thats been amazing for me especially my Ph. My Ph was so bad that my body was pulling minerals from my bones. My doc was worried about bone loss.
    My digestion is not bad now. There are certain foods I react to: ice cream makes me feel light-headed probably because of the Candida. Deep fried stuff makes me tired and coffee wires me in a bad way. THe coffee thing is probably because of my Methylation pathway mutations.
    Anyway, would like to know what you did for live detox.
     
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I note that the first article cited in this thread was in vitro and I couldn't quickly find any human studies. I would disregard animal studies - they are very poor predictors of effects in humans.

    However, I did find this statement in another study:

    This is only an association and gives no indication of causation, but it might be worth seeking out any studies that strongly suggest causal links.

    I will never touch d-ribose again as it had horrible effects on me. I took
    2 x 5g a day, but only for a few days.
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Was your pH too high or too low?
     
  15. Bansaw

    Bansaw Senior Member

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    My Ph was far too acidic.
     
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  16. Mary

    Mary Senior Member

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    First, through muscle testing my chiropractor determined that the main problem with my liver was chemical solvents from a job I had when I was 19. And then he gave me Parotid and Cholacol II by Standard Process. I took them for 30 days, it was somewhat rough, I got very tired, felt like crap but I stuck it out, and am very glad I did. I looked up Parotid on the SP website and don't know why it was indicated but it worked with the Cholacol II.

    I did take Zypan at one time as well. The first ingredient is hydrochloric acid, which I've been taking for many years now, and what I take also has pepsin in it.

    At one time my gallbladder kept getting inflamed and again the chiro helped me there with Betafood AF by Standard Process. THis is amazing stuff. But eventually after the liver detox, and after I started taking HCL w/pepsin regularly, the gallbladder problems stopped.

    Since fried foods make you tired, it's possible your liver may be toxic or your gallbladder may need some support, as fried food is very hard to digest. Ice cream is high in fat, again hard to digest. You may need more HCL than you're getting with the zypan. Although in general probably most people would benefit from a liver detox given the world we live in and since your doctor thought your liver might be toxic, a liver detox might be a really good idea. It helped me so much. But you do have to go slow.

    So I don't know if the Parotid product was specific for chemical solvents or just used for liver detoxing in general. The Cholacol II has betonite for mopping up toxins. I don't remember the doses - (this was back in 2002)

    If you are interested in finding a chiropractor who does this, you can find practitioners who use SP products on the SP website.
     
  17. Bansaw

    Bansaw Senior Member

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    Thanks Mary, I've used Cholocol before. I will ask my doc about liver detox. She will definately know about this. I do have issues with fats and think I need support in that area.
    At the moment I just started taking CoQ10 and will start Ribose soon. Acetyl- L-Carntitne is helping me in the 10 days I've been taking that. I am wondering about Alpha Lipoic Acid , adding that, and B12 in the future...
     
  18. Mary

    Mary Senior Member

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    Your doctor sounds like one in a million - literally! What is her name and where is she located?

    Other symptoms I had with a toxic liver were just a general feeling of unwellness, fatigue, lightheadedness, spaciness, and of course digestion just off.
     
  19. Bansaw

    Bansaw Senior Member

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    Dr.Andersson, Hendersonville, NC. Although she didn't prescribe the Carnitine, Ribose or Alpha Lipoic. I told her about it and she said that I could go ahead. But the whole idea of healking the gut first and prescribing quality supplements has helped me. I went to her first regarding my Methylation cycle and she's apparently skilled in this but she's only put me on Methyl Protect so far and claims this is helping. My blood tests bear her comments out as I can see certain levels improving. But she has yet to sucesfully address my energy lack or my sleep issues. But, I've only been seeing her since January. Shes good though.
     
  20. Mary

    Mary Senior Member

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    Re sleep - some things that have helped me that hopefully your doctor will look into -

    One of the biggest things was getting my cortisol levels normalized. The Adrenal Stress Index Test, a saliva test using samples taking 4 times during the day/evening, showed high cortisol levels at night when they were supposed to be lower, and this caused severe middle of the night insomnia for me. Seriphos (phosphorylated serine) was invaluable in getting my levels back to normal and I started sleeping much better once I found the correct dose, which took a little trial and error. It's non-prescription. You can google it.

    5-htp also helped a lot with sleep - it helps the brain produce serotonin naturally

    and, I have only recently discovered that niacin can help a lot with sleep. It stimulates the GABA receptors (GABA is a calming neurotransmitter). All these years and lots of research and only recently discovered this. I now take 500 mg. after dinner and I'm sleeping better. I also take 200 mg. l-theanine before bed and magnesium and calcium and 100 mg. 5-htp - my bedtime cocktail, also 3 mg. sublingual melatonin --

    Good luck with everything
     

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