Julie Rehmeyer's 'Through the Shadowlands'
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Muscle weakness / ATP testing / confused

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Hope78, Jan 4, 2016.

  1. Hope78

    Hope78

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    Hi!

    This morning I got my ATP testing back. The ATP level was measured in T-cells and should be >95. Mine was 88. Ok, a bit low but not soooo bad I guess. lactat/pyruvat was also checked but I have not the results yet (habe to wait 2 weeks).

    Dr Myhill wrote this:
    However there is another problem. If the body is very short of ATP, it can make a very small amount of ATP directly from glucose by converting it into lactic acid. This is exactly what many CFS sufferers do and indeed we know that CFS sufferers readily switch into anaerobic metabolism. However this results in two serious problems - lactic acid quickly builds up especially in muscles to cause pain, heaviness, aching and soreness ("lactic acid burn"), secondly no glucose is available in order to make D-ribose! So new ATP cannot be easily made when you are really run down. Recovery takes days!

    Unfortunately that's exactly what I am experiencing: burning and weak muscles with twitching and cramping all over after only 5 minutes of walking. And even after a good nights sleep when I don't feel so exhausted!

    So I really ask myself why ?
    I also have low levels of carnitine and Q10 (both at the lower end but still in the normal range).

    So why could it be that my muscles easily seem to switch into the anaerobic mode despite my ATP levels aren't so low?

    Any suggestions?

    Thanx!

    Hope78
     
    Little Bluestem likes this.
  2. Mij

    Mij Senior Member

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    @Hope78 have you had any viral testing? At times I have what you experience when I have a viral infection. ie; burning, weak and stiff muscles.
     
  3. Valentijn

    Valentijn The Diabolic Logic

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    Because 5 minutes of walking is too much for you. If it provokes immediate or delayed symptoms, don't do it :p

    Magnesium keeps my twitching and cramps away, but I still have to be very careful to respect the limitations of my muscles. I use Jarrow's Magnesium Optimizer once per day, but do fine with anything except magnesium oxide or magnesium chelate.
     
  4. Hope78

    Hope78

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    Hi MiJ,
    I had EBV testing, no reactivation. I have the muscle burning since April (sudden onset after 15 minutes on my hometrainer). Since then it never disappeared.
     
  5. Mij

    Mij Senior Member

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    @Hope78 ohhh the burning came after the home trainer. During the second year of illness I got on my step climber for 20 minutes and had aching and burning muscles afterwards which lasted 9 months. It was terrible. I started taking Cal/Mag supplements which helped and I eventually recovered from that ordeal.

    Also, when you start feeling better don't get on the home trainer anymore.
     
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  6. charles shepherd

    charles shepherd Senior Member

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    You may not be aware of the research that the MEA Ramsay Research Fund has been funding into this commercial test:

    http://www.meassociation.org.uk/201...-further-mitochondrial-research-20-july-2015/

    http://www.meassociation.org.uk/201...-further-mitochondrial-research-20-july-2015/
     
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  7. Mary

    Mary Senior Member

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    @Hope78 - magnesium as others have noted would be very good to try, and possibly calcium as well. Also I'd look into potassium.

    I'm currently experimenting a little with B1/thiamine - it can help with lactic acidosis, which I believe (though I could be wrong!) is related in some way to the lactic acid buildup associated with PEM. However, I'm discovering that B1, although it initially helped my energy, seemed to deplete something else (not potassium, I tried that), and I'm guessing it is phosphate, which idea I got from Freddd's post on refeeding syndrome and hypophosphatemia and some other things.

    So there may be a couple of different variables at work, but the main thing until you sort it out is, as others said, stop doing what makes your legs burn.
     
  8. Sea

    Sea Senior Member

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    Thanks for that link charles shepherd.
    @Hope78 This quote from Norman Booth may explain why you're suffering in spite of a not too low ATP
    Ie you're making ATP but the pathway you're body is using to do so is not ideal and comes with nasty consequences
     
    Sidereal likes this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I am not sure what ATP in circulating T cells would have to do with ATP in muscles. It seems a very strange thing to test for. My memory is that we do not in fact have good evidence for a shift in anaerobic use of glucose in muscle in ME. There were some studies that suggested changes but I do not think much more has come of it. If it were really the case then MR spectroscopy ought to show it fairly clearly I think. To get a build up of lactate after 5 minutes walking enough to give symptoms ought to be easy to measure. The person who really ought to know about this is David Jones, who has worked with Julia Newton and used to be in the muscle unit at UCL. It worries me rather that Dr Myhill is giving such dogmatic interpretations when I really don't think we know enough to say this.
     
  10. jimells

    jimells Senior Member

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    Dr Shepherd, do you have any idea when it will be published? It will certainly be interesting to see the results.
     
  11. charles shepherd

    charles shepherd Senior Member

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    This research study has been completed.

    The results are now being assessed and written up for publication.
     
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  12. Hope78

    Hope78

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    oh wow, so many helpful answers, thank you all!

    @Valentjin:
    I don't not ans effect with magnesium, but perhaps the dose was too low? I was recommended magnesium threonate, it's new and it is said it crosses the blood brain barrier more easier and has a calming effect on the brain (will try it for my insomnia).

    @Mij:
    Until April I was able to be on the treadmill for 15 mins (lowest level) after a very good nights sleep and it really made me feel better, improved me sleep. Really don't know why I suddenly was not able any more.

    @Mary
    I guess that's the problem with most supplements, there is always the "danger" to trigger some imbalance when used excessively

    @Sea:
    very intersting stuff! I tried to read in this adenine nuceotide pathway, but haha, I did not get the hang of it as a lay person.

    Jonathan Edwards:
    that's what I asked myself, too. Does a certain amount of ATP in the T cells predict the same amount in the liver, musceles....ect? Probably not! So probably the testing is not very reliable.

    @Chales Sheperd:
    Would you suggest this test as reasonable?

    I am feeling that these whole muscle thing is really getting worse the less sleep I get. There's a range from only a little bit of burning and twitching when I slept well to severe wekaness, cramping and an overall feeling sickness after a very bad night. Usually my muscles, when I sleep well, recover withing 24 hours
     
  13. bertiedog

    bertiedog Senior Member

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    @Hope78 When my muscles get really bad and basically won't work properly (especially my legs) it usually turns out that I have got a throat infection brewing. Once it becomes obvious that's what's happening and I get on Azithromycin, very quickly they start to improve. I guess this would happen wherever the infection is.

    I do take lots of magnesium citrate, 600 mg daily plus creatine 5g, co q10 100 mg which all help with ATP production. An Epsom salt bath is a good way of getting magnesium into your cells btw.

    The other thing to check out that can really affect ones muscles is the thyroid. It only has to go off and the muscles suffer very badly. I have Hashimotos but it wasn't diagnosed by the NHS I was lucky enough to find a knowledgeable private doctor and have hugely benefited from desiccated thyroid (apart from frequent throat infections). However I had probably got problems with my thyroid for 5 years before it was correctly diagnosed. My blood tests looked ok except the T4 was at the bottom of the range and I think I had a problem with conversion to the active hormone T3 way back then but as far as my GP was concerned "your thyroid is fine". Two stone later and hardly able to lift my arms above my head to hold a hairdryer I knew I had to go and look elsewhere for a second opinion and thankfully I found somebody who actually knew that the TSH was not a good measure of thyroid function.

    As others have said its definitely counterproductive to try and do anything more than minimal exercise if you are suffering.

    Pam
     
  14. Hope78

    Hope78

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    @bertiedog: thanks for your reply.. Theres definitely no infection going on and my thyroid is finde, TSH 0.9 and ft3 & 4 ok, no Hashi. I guess there must be another reason
     
  15. Hope78

    Hope78

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    I got my lab testing back today for pyruvate and lactate. I was willing to bet there was something wrong, but everything is perfectly normal!!
    So my muscle wekaness/twitching/cramping must be due to something else. My family doctor said it's just "psychosomatic". But I am really open for psychosomatic explanations...but I feel that something different than only the psyche is going on here and I really wished I had some kind of explanation so that I could work against it, taking the right supplements...
     
  16. Sea

    Sea Senior Member

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    Psychosomatic = I can't find anything to explain this so it must not be real.
     
  17. jimells

    jimells Senior Member

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    There's no psychosomatic explanation for this illness - mainly because it's a physiologic illness, as even the Institute of Medicine is willing to acknowledge in last year's report.
     
  18. roller

    roller wiggle jiggle

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    that there is trouble breaking down lactic acid, i was told once as well.
    and i believe, it was confirmed for my older brother, too.

    I understand, this causes increased iron binding in the body, which may lead to hyper-bacterial (pathogenic) growth.
    In addition to genetic predisposition for iron overload, which is one of the most common genetic defects, for all i know.
     

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