1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.
  1. mon me

    mon me

    Messages:
    53
    Likes:
    5
    ATP production is highly dependent on magnesium.

    Dr.Myhill writes on her website that "AMP can be recycled, but slowly. Interestingly, the enzyme which does this (cyclic AMP) is activated by caffeine! So the perfect pick-me-up for CFS sufferers could be a real black organic coffee with a teaspoon of D-ribose!"

    Has anyone tried this combo? I think it would send me right through the roof and give me irritated bad energy but I may try it to see what happens.
  2. Mary

    Mary Senior Member

    Messages:
    193
    Likes:
    119

    Mon ame - I do take d-ribose with my morning coffee every day. I started taking d-ribose almost 5 years ago, and then a couple of years ago read Dr. Myhill's comment about taking it with caffeine, so I started doing that. It never gave me bad energy, although I don't think I still get the initial boost from the d-ribose that I did in the beginning. However, I am having more energy with Freddd's methylfolate/methylcobalamin protocol, with added potassium

    One important thing I learned from Dr. Myhill is that d-ribose has a short half-life so it's important to take it every couple of hours. So I take about 1/2 tsp. when I first get up with my coffee, then 1/2 tsp. with breakfast, then mid-morning, and after lunch and dinner. It does give me more sustained energy, although it never stopped me from crashing. And did not give me the energy I am getting with the methylfolate etc.
  3. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    Hi Freddd - no I didn't try removing folic and folinic and increasing Metafolin (might try that). And no I haven't been taking any glutathione and precursors.

    Jenny
  4. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    My doc supplied the mask. It cost about 200. It's manufactured by Respironics.

    Jenny
  5. Rockt

    Rockt Senior Member

    Messages:
    296
    Likes:
    13
    Hi Freddd.

    If only I could exercise to a pulse rate of 125-140!! I was formerly very athletic and I miss working up a sweat. Unfortunately, I've become quite exercise intolerant - my BP actually drops, from an already low 100/70, (at the best of times), to as low as 80/50 when I attempt to increase from more than an easy walk, (which I can do for approx. 15-20 minutes). And the crash that follows is BAD, often lasting a week or more, while, possibly, my ATP mechanism replenishes to its previously crappy state.

    Thanks to everyone else, as well, for your thoughtful responses.
  6. Mary

    Mary Senior Member

    Messages:
    193
    Likes:
    119
    Rockt - one more thing - are you supplementing with potassium? I have found that it is extremely important since starting the methylfolate supps. When I first started this protocol, my blood pressure went up to over 140 over something, which it never does, and I took potassium to bring it back down. But now it goes the opposite way - down to 100 or less as the top number. I also get very tired then (different tired than crashing), so those are signals to me I'm low on potassium. It does bring my BP back up to a normal range of over 110 and the heavy fatigue goes away, so I try to keep a steady rate of potassium going on - I take about 1100 mg. a day in 3 divided doses.

    Looking back, I realize now that some of my fatigue before even starting the protocol was due to low potassium. I looked at my last blood test and my potassium was at the bottom of the normal range but my doctor never pointed it out and I didn't know the link between potassium and fatigue. There's a significant one.

    One last thing - I've tried 2 different types of potassium, and both caused burning when I peed. It wasn't a UTI. I finally settled on potassium citrate which I got yesterday and I think this one will be okay. It's supposed to be more easily absorbed and so far so good.

    The potassium doesn't prevent me from crashing, but it certainly makes me feel better and may be helping my stamina a little.
  7. Rockt

    Rockt Senior Member

    Messages:
    296
    Likes:
    13
    Thanks Mary.

    I take 400mg potassium citrate, but will up the dose and see if it helps. Do we know what a safe upper limit is?

    Weird about the crashing. When I first started the B12/MF, I felt a noticeable, if not earth-shattering, improvement and didn't crash for about 6-8 weeks. Now I seem to crash every few days.
  8. Mary

    Mary Senior Member

    Messages:
    193
    Likes:
    119
    I don't really know the safe upper limit for potassium. However, I've read our daily requirement is around 4,000 mg, so one 99 mg. tablet is only 1/40 of the daily requirement. I was nervous at first about taking it, and just gradually increased the dose and am doing fine on 1100 mg. a day which is roughly 25% of the daily requirement.

    I just thought of something - the potassium really may be more of a factor than you think. I've wondered about this myself as my need for it has increased since I started the B12/MF. It could be that as time goes on, more healing is occurring, causing a greater and greater need for potassium. Especially because your BP is so low, it really makes me think that could be an issue for you. I don't know if this would affect your crashing or not, but I would definitely increase your intake of potassium till your BP gets to a good level and see how you do.
  9. Rockt

    Rockt Senior Member

    Messages:
    296
    Likes:
    13
    Thanks again Mary. I've begun today to increase the pot.

    I hope your theory is right, that more healing is occurring. That would be a good thing as I could use a little healing :)
  10. Freddd

    Freddd Senior Member

    Messages:
    4,538
    Likes:
    891
    Salt Lake City
    Hi Mary,

    I too started at about 400mg/day and titrated up to 1200mg daily. I still have to take additional potassium each time I come out of paradoxical folate deficiency as I dump water like mad. I used to have multiple episodes of spasms etc per week and taking additional doses almost daily until recently. My need doubled during the glutathione trial and immediately after.

    Potassium in the body is a 2 compartment model; there is the serum and then the body itself. Serum potassium varies daily and can move quickly but is buffered by the body. As that goes up or down, the body potassium follows more slowly. When the body is "full" suddenly the serum goes up a lot from small input. This is when it can get dangerous. It took me a year of 1200mg/day to go from 4.1 to 4.6. It took one bad bout of folate deficiency to dump me down to 3.6 in a month or two.
  11. Mary

    Mary Senior Member

    Messages:
    193
    Likes:
    119
    Hi Freddd - that does sound a little scary, the serum potassium going up suddenly very quickly when the body is "full". I am a little confused, as everything I read says that if your kidneys are in good shape, they filter out the excess. But it sounds like you are saying not necessarily .... so I don't know really how cautious I should be with this. I am going by how I feel and my BP together -- and don't have access to frequent of blood tests -- so any suggestions?

    It is interesting it took a year for your levels to go from 4.1 to 4.6 - did you cut back on potassium at that time?
  12. Freddd

    Freddd Senior Member

    Messages:
    4,538
    Likes:
    891
    Salt Lake City
    Hi Mary,

    Let's keep this possibility of high potassium in perspective. It is about 100,000 times less likely than low potassium and probably some millions of times less probable in the absence of kidney damage. You are more likely to be killed in a car wreck.

    A single 500mg dose of potassium isn't likely to kill anybody. If it relieves symptoms low potassium is obvious. If you were taking 5000mg a day of potassium for a year you might be able to force a high potassium occurrence in the absence of kidney damage. I start getting abnormal screaming muscle spasms while relaxed at about 4.2-4.3. Learn what your earliest symptoms are that are relieved by a 500mg dose. Quite a few people have to take 1000mg+ daily just to hold level.


    It is interesting it took a year for your levels to go from 4.1 to 4.6 - did you cut back on potassium at that time?

    No. I had an bad episode of paradoxical folate deficiency and my potassium dropped like a rock to 3.6. I had just been getting comfortable.
  13. Rockt

    Rockt Senior Member

    Messages:
    296
    Likes:
    13
    I have foamy urine and while my kidney tests showed that everything is OK, I still worry about kidney problems. What are the ramifications of taking 1200mg potassium/day with possible kidney issues?
  14. kaffiend

    kaffiend Senior Member

    Messages:
    166
    Likes:
    122
    California
    I'm finding that limiting/removing minerals bound with citrate to be helpful with energy. Excess citrate can actually inhibit one of the rate-limiting steps for the production of ATP. I found that a number of the mineral supplements were all of the citrate form, perhaps leading to excess. D-ribose is also very effective for me.

    Now that I have more energy, adrenal support seems to be the key. I prevent crashes with pre-emptive rest by reclining/relaxing for 15 minutes before I do anything. I don't even flip through a magazine - just put earplugs in and relax. When I go out or to work, if I feel even the hint of fatigue coming on, I just stop and sit down for a few minutes. Even if it's on the curb.
  15. Freddd

    Freddd Senior Member

    Messages:
    4,538
    Likes:
    891
    Salt Lake City
    Hi Rockt,

    For me, the foamy urine was characteristic of folate deficiency of any of several forms. Have you elliminated folic acid, folinic acid, NAC, glutathione and it's precursors and whey and are taking Metafolin?

    It might be good to check your serum potassium. If the 1200mg isn't making a noticeable difference that may not be your problem. If it is a folate deficiency then cell formation requiring potassium won't start up until you correct the problem.
  16. Rockt

    Rockt Senior Member

    Messages:
    296
    Likes:
    13
    Thanks Freddd.

    Well, I switched from B-Right to AOR Advanced B-Complex, (lists folic acid, but I believe you said it's an OK from, or something). I also bought Source Naturals Ab12, but it doesn't seem to do much for me. Country Life Ab12 gives me a very temporary, slight "lift", while it's dissolving, but the effect is gone as soon as the pill is. However, I've been taking one once in awhile, if I have to go out to do something for a little extra energy. Taking Solgar Metafolate, 1200mcg daily, in 3 doses. Other than that, no extra folic acid or folinic acid and I don't take NAC, glutathione or whey, (though I tried the latter 2 briefly about 2 years ago -didn't do anything so I discontinued it).
  17. Mary

    Mary Senior Member

    Messages:
    193
    Likes:
    119
    Thanks, Freddd - I appreciate all the info -
  18. Rockt

    Rockt Senior Member

    Messages:
    296
    Likes:
    13
    This seems to be exactly what is happening with me, (and presumably others):


    In CFS patients, one of the main causative factors is inefficiency in recycling ADP back to ATP again. This pathway is often the bottleneck in energy production in such individuals. If the cell is not efficient at recyling ADP to ATP, then the cell runs out of energy very quickly, which causes the symptoms of weakness and poor stamina. The cell must then go into a 'rest' period until more ATP can be manufactured/recycled (from ADP). At any one time, the cells in the heart muscle only have enough ATP in reserve for around 10 contractions. If a cell is pushed to produce energy when no ATP is available, then it will use the ADP instead, and convert this into AMP (adenosine monophosphate). AMP consists of a phosphate group, the sugar ribose, and the nucleobase adenine. AMP cannot however be recycled, which is why the body does not normally use ADP to produce energy from. Any ATP which is converted to AMP is considered to be 'spent'. So any ATP must be recycled from any ADP that remains, and the rest must be created from scratch using fresh raw ingredients. To create ATP from scratch, the body must first breaking down the various proteins, triglycerides, fatty acids and sugars into their constituent parts, and then the mitochondria must build up ATP from these components using its enzymes ATP Synthase (see the Krebs Cycle above).

    The slow production of ATP by the body from scratch (when little or no ADP is available to convert) partly explains the delayed and prolonged fatigue that CFS patients experience after intensive activity, 'overdoing it' (more severe than their 'usual fatigue', i.e. a 'crash' or a 'flair') or even losing too much body heat (outside in the cold or at night with insufficient blankets). This is why CFS patients should try to pace themselves and take regular breaks and respect their limits so that they allow themselves a chance to regenerate ATP again rather than converting too much ADP to AMP, where they end up in the deficit part of the cycle (i.e. feeling much more fatigued than normal etc.)


    From:

    http://www.medicalinsider.com/mitochondrial.html#nutritional.html#homo

    (which is everything you ever wanted to know about mitochondrial dysfunction... and more)

    How do we ever correct or "re-set" something so complicated? Can B12/metafoilin and co-factors possibly fix this?
  19. Freddd

    Freddd Senior Member

    Messages:
    4,538
    Likes:
    891
    Salt Lake City

    How do we ever correct or "re-set" something so complicated? Can B12/metafoilin and co-factors possibly fix this


    I gave you a list of supps on another post. This running out of ATP can happen TWO places; body and CNS-Brain. For some people, ie those with FMS/CFS, the brain receives much less mb12/adb12 than one would expect based on healthy people. This is the CSF-CNS deficiency I have spoken of. This is what the 50mg sublingual doses over 3 hours or so of adb12 one day and Mb12 another day is supposed to first detect by response and then correct. I have this response to every injection of mb12 of 7.5mg or more until I get up to a total of 30mg a day in 3-4 doses. However, a single dose of 50mg sublingual a week of adb12 maintains CNS-CSF equilibrium. In doing this correction I would also suggest 2400mcg of Metafolin both just before and just after the mb12 or adb12 dose. If these things work, then you will know what works. If it doesn't then likely it is something else.

    In any case, L-carnitine fumarate must be in place before trying the 50mg of adb12. The D-ribose can be taken severl times a day.

    Fred

See more popular forum discussions.

Share This Page