New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
Discuss the article on the Forums.

Little success with anything, just glimpses. Krebs cycle possibly....

Discussion in 'General Treatment' started by Ben H, Mar 9, 2016.

  1. Ben H

    Ben H OMF Correspondent

    Messages:
    784
    Likes:
    8,838
    U.K.
    Hi guys,

    I'm really struggling at the moment and would appreciate some input. My fatigue, exhaustion is horrendous, (aswell as usual symptoms) and my legs and arms so so heavy.

    I've had CFS for almost 5 years now, and nothing has helped more than transiently.

    Tests are as follows:

    Mitochondrial dysfunction, low whole atp, low amp, poor recycling, low serum carnitine

    Positive Elispot for Lyme, one month IV rochephin, no improvement in symptoms.


    I have tried all the usual mitochondrial supplements, aceytl l carnitine, d ribose, coq10, ubiquinol etc and not so much as a glimmer of hope from them!




    The only things which have helped, and then stopped (lack of cofactors?) have been:

    L carnitine Fumarate. Decreased the heaviness and 'lactic acidy' feeling in my legs. For a day and then subsequent dosages nothing.

    Armour Thyroid 1/2 grain. 30% more energy, not jittery, but normal energy within 2 hours. Contains 4.5mcg of t3 so must have been that, but stopped working after a few days. I didn't increase dose, had tests done and all my numbers were normal, within range. Ft3, ft4, tsh and rt3.
    Ft3 was high normal, rt3 ratio was good. Tsh is always above 3+ and my temps rarely above 36.2c. I know t3 can have an effect on mitochondrial biogenesis but the result was so quick and dramatic, I'd be amazed if that was it.

    Infra red sauna. After two days use, better grip strength and much less brain fog and clarity of vision but again stopped working after those two days (was supplementing with electrolytes etc) and now they make me feel rather ill.




    For me, I am convinced my main issues are mitochondrial, and probably Krebs cycle related, or the electron transport chain not working. I can't afford a nutraeval test atm, but I'd be interested to see if any of you guys have an idea for example why the lcf stopped working, what co factor might be needed etc.


    Thanks
     
  2. helen1

    helen1 Senior Member

    Messages:
    974
    Likes:
    1,371
    Canada
  3. Deltrus

    Deltrus Senior Member

    Messages:
    271
    Likes:
    356
    Have you tried b vitamins?

    Have you tried 100 mg b2 alone?

    B2 is needed for b6, b12, b9. B12 is needed for B9. Taking B2 in b complexes wont necessarily work, it might even use up stores faster because B2 stores rapidly get used up in order to activate the other b vitamins, which mostly get peed out because the doses are so high.

    B vitamin protocols involve a trace minerals pill, adenosylb12(dibencozide), methylb12, good forms of folate (b9) such as methylfolate, (6S)-5 Methyltetrahydrofolic acid (sometimes called quatrefolic, deplin).

    This site http://lpi.oregonstate.edu/mic/articles

    has lots of info on how all the vitamins and minerals can effect stuff like the kreb cycle (aka citric acid cycle). Thiamine for example is needed at 4 different locations related to the kreb cycle. [​IMG]
     
  4. Mary

    Mary Senior Member

    Messages:
    2,894
    Likes:
    6,548
    Southern California
    @Ben Howell - I had similar results re low ATP etc. I did Nutreval testing done, which showed very low B6. I also had low leucine (one of the branched chain amino acids)

    I started taking BCAAs a year and a half ago, and they cut my PEM recovery time in half, I still take them.

    I also tried all the mito supplements, and d-ribose helps me some. l-carnitine years ago helped a lot for about 10 days and then stopped.

    Far infrared saunas made me feel quite sick - they caused a strong detox reaction. I might be able to tolerate them now since my detox pathways seems to be working much better than a few years ago. I credit this to 3 amino acids: inositol, glycine and l-glutamine - it's a long story, but I had to go very slowly, initially these caused a strong detox reaction (particularly the glycine) but I can now tolerate it with no problem.

    Here are some things which have helped me with energy:

    B6 in the form of P-5-P - I currently take two 50 mg. capsules a day (one with breakfast, one with lunch) - this made a noticeable increase in energy

    folate (Solgar metafolin) - noticeably increased energy, also increased need for potassium - had to titrate up to around 1000 mg. potassium gluconate a day. I now get some of my potassium from low-sodium V8

    methylcobalamin - You have to take B12 if you are taking folate, for folate alone can mask a B12 deficiency.

    B2 - I tried taking this a couple of times and had a bad reaction each time, so I gave up on it. But I know it helps some (a lot?) of people so it's definitely worth a try

    B1 - this is currently helping me quite a bit with energy. I'm taking benfotiamine, 150 mg. (two 75 mg. doses) a day. This also increased my need for phosphorus/phosphate, which is also important for energy. I'm getting phosphorus/ phosphate in kefir and/or yogurt, plus a small dose in a monosodium phosphate supplement. From what I read you have to be careful when adding in phosphorus and I am being careful and doing fine.

    The B1 also seemed to deplete one or more of the other Bs, it was too daunting for me to try adding in each one, so I got the idea of using brewers yeast which I theorized had the Bs in the proper ratio and that seems to do the trick, and I've actually stopped my B complex and replaced it with brewers yeast.

    The B1 also helps with the lactid acid feeling in my legs. I'm hoping it will eventually help with PEM.

    Weak adrenals - this can cause severe fatigue as I'm sure you know, and adrenal glandulars like Drenamin by Standard Process have helped a lot. I'm going to be re-starting licorice for this.

    This all took quite a while to sort out, sort of a long continuous lab experiment! :eek:

    I strongly recommend you try only one thing at a time so you will know what is doing what to you. Also, muscle testing has helped me a lot with all of this. I've seen some very good chiropractors who have helped determine what my body likes and what it doesn't, and also proper doses, and they've helped a lot when my adrenals were wiped out and also with several digestive issues. I also do muscle testing on myself, and would be lost without it.

    Good luck!
     
    Ben H likes this.
  5. Mel9

    Mel9 Senior Member

    Messages:
    481
    Likes:
    1,149
    NSW Australia
    How about long term antibiotics for your Borrelia infection?
     
  6. hvac14400

    hvac14400 fatty & acid : )

    Messages:
    189
    Likes:
    109
    how much carnitine was taken per day? you need more than 2-3g total of pure carnitine itself - not fumarate, 3-4 times a day, and process of switching your metabolism to primarily glycolisis would take some time - up to 2 weeks.
    i personally used up to 6-7g per day in the past, year round and got very high boost in energy level from this. but then it stopped working eventually too : )

    how you know that you need more potassium - any side effects? how much folate you taking?
    also folate may cause or only mask deficiency in b12? coz you get b12 from your daily multivitamins anyway - isn't it enough?

    am using 4mg per day now, without any additional potassium/b12, no problems so far.
     
  7. Mary

    Mary Senior Member

    Messages:
    2,894
    Likes:
    6,548
    Southern California
    @hvac14400 - Here's an article about folate masking or hiding (not causing) a B12 deficiency: http://www.medscape.com/viewarticle/726357_6
    When someone is deficient in folate and/or B12, often (not always) their MCV (mean corpuscular volume) on blood work will be elevated. When someone starts taking folate, the MCV can come back down to normal; however, they can still have a B12 deficiency which may be overlooked because the MCV number is now normal. And a prolonged B12 deficiency can cause neurological damage. and I seriously doubt whether the B12 in your multi is sufficient. Many of us here take methylcobalamin (B12) sublingually, it's one of the best ways to get it. I take 5000 mcg. methylcobalamin (sublingual) and 1600 mcg., or 1.6 mg. of methylfolate. Your 4 mg. of folate is a pretty high dose, so to protect yourself, I would definitely add in more B12.

    I knew I needed more potassium because of severe fatigue which hit me 3 or 4 days after starting methylfolate. At first the methylfolate gave me a boost in energy, and then the severe fatigue hit, which went away when I gradually titrated up to 1000 mg. of potassium a day. You should not take a large dose of potassium all at once, that can cause problems. I currently take about 1000 mg. of potassium gluconate a day, plus often will have low-sodium V8 which is high in potassium.

    This link has some of the symptoms of low potassium. They can also include muscle cramps or spasms, cardiac symptoms and so on: https://www.nlm.nih.gov/medlineplus/ency/article/000479.htm
     
    helen1 likes this.
  8. hvac14400

    hvac14400 fatty & acid : )

    Messages:
    189
    Likes:
    109
    @Mary
    hmm - if b12 from ordinary multi isn't enough, then i must already have all sorts of neurological damage, and irreversible types too, so i just can't see a point in beginnig supplementing it now, after so many years of not using even multi : )
    wow - 5000mcg of b12 it's like 83000% rda - are you sure this thing is bioavailable for you at all? % ) coz when i take 2000mcg of these http://ru.iherb.com/Now-Foods-B-12-1000-mcg-250-Lozenges/417
    i feel bad already, so i don't supplement them separately.

    about potassium - i am taking not methylfolate, but just ordinary folic acid, so maybe because of its low bioavailability there's not that big need in additional potassium? or because of this

    Untitledss.png

    btw - can we trust hair mineral analysis at all - is it reliable source of information?
     
  9. Mary

    Mary Senior Member

    Messages:
    2,894
    Likes:
    6,548
    Southern California
    Hi @hvac14400 - one of my doctors has used hair analysis for years and tells a lot by it. Your cobalt - which shows B12 status - is extremely low. Your reasoning that since you may have been deficient for years and thus shouldn't start taking B12 now makes no sense. I'm sure you know B12 is crucial for energy and mental functioning, etc. You are very very low in it, so even though you may have been low for years, you should still start taking it now. You can prevent further damage, maybe repair some already if you have some, and you might feel better. My sister who was a vegetarian for years developed numbness in various parts of her body, it would move around. She started taking B12 and within a week her symptoms subsided. She wasn't taking sublingual, but instead took this product, which worked well for her: http://www.iherb.com/Now-Foods-Ultra-B-12-16-fl-oz-473-ml/21324

    If you read about B12 bioavailability, you'll find that there is no easy way to get enough B12, and that sublingually is one of the best ways. You're right, you're not going to absorb all of it, but you should absorb more than if you took a pill orally. One other option is B12 injections, though again what I've read is that sublingual is comparable to the injections. You can do your own research on this. Did your doctor order the hair analysis? If so, what did he or she say?

    Re your potassium - it looks good, and if you don't have symptoms of low potassium, that's great. I would suggest you switch to methylfolate. Folic acid is synthetic, our bodies have to convert it into folate, and folic acid can actually cause a folate deficiency because it competes for absorption with folate. And it is possible that if you switched to methylfolate, it might increase your need for potassium because your cells may start to work how they are supposed to (or maybe not :rolleyes:) but it's good to be aware of. If I hadn't known about the potential for low potassium, I would have had to stop the methylfolate, which would have been very unfortunate because it initially increased my energy and made me feel better.
     
  10. Mary

    Mary Senior Member

    Messages:
    2,894
    Likes:
    6,548
    Southern California
    Also, if you feel bad when you take the B12 lozenges, it might be causing your potassium to drop suddenly, which will make you feel like crap. Even though your potassium appears normal on hair analysis, it could still drop suddenly when you start to treat a folate and/or B12 deficiency, because you could suddenly need a lot more potassium. Just something to think about - and again, your B12 is very low.

    btw, I'm not a doctor or anything, and just am passing on what I've read and also what I have experienced ---
     
  11. hvac14400

    hvac14400 fatty & acid : )

    Messages:
    189
    Likes:
    109
    ello @Mary : )
    you can't just say that am low on b12 or any other b's - coz i don't have (and never had) anemia or any other symptoms of severe b-deficiency - it's just a plain logic. my hemoglobin is on a higher end for example all the time.
    my cobalt is nonexistent - so as my lithium, right, which according to link that @helen1 posted means that i can't metilate sh!t, but one doctor told me that i was in a state of overmetilation when i was doing that hair analysis.
    so i don't know whom to trust % )

    no - i ordered it by myself just to check that the lab is actually analysing anything - i sended them 2 sample collected in the same day through 2 different practitioners, about 1 month apart, from 2 different persons and then compared results - they were almost identical : ) but i don't want to pay for retesting every 3 months and for their supplements, so i ditched this idea of curing through mineral balancing.

    actually i don't feel any increase in fatigue from it like you do - it increases my intracranial pressure i guess, coz i start getting headaches from it and my head feels heavy, if i remember correctly. and one more reason why i scared about manipulations with potassium - i got hearth arrhythmia like 20 years ago, so i don't want to bring my hearth to a stop from either too high or too low plasma potassium level.

    but you got me thinking about checking b-levels in some way anyway.
    am not a doctor too, and thank you for your time and information - am learning slowly.
     
    Last edited: Mar 11, 2016
  12. Mary

    Mary Senior Member

    Messages:
    2,894
    Likes:
    6,548
    Southern California
    Hi @hvac14400 - your hemoglobin doesn't have anything to do with your B12 levels. My doctor told me my B12 was very low because my cobalt levels on a mineral test were almost non-existent, although my hemoglobin was fine. He said that cobalt levels help indicate B12 status. Also, my formerly vegetarian sister did not have fatigue associated with her numbness and tingling, which were nerve problems which were resolved when she added in B12.

    But of course I can't diagnose you. I'm repeating what my doctor told me about cobalt on a hair test.
    And, on blood work, my B12 levels were high. But this was an indication that I wasn't using B12 properly, so it wasn't getting absorbed. If I used B12 properly, I would not have to take such a high dose.

    It would be very good to find out what your MCV (mean corpuscular volume) number is (see the post I did above about this). My MCV was in the normal range, but near the top of the normal range, like 97 or so out of 100. The red cells enlarge when you are deficient in B12 or folate, or both, so if you can get this number it can give you more information. It won't tell you whether you are deficient in B12, or folate, or both, but it is an indication that you most likely are deficient in one of them. And again, if someone is taking folate without B12, the MCV can go back to normal, but you can still potentially have a B12 deficiency, but the blood test will no longer indicate it.

    A very safe way to get more potassium if you think you may need it is to get it in food - e.g., there's a vegetable drink here called V8 which is very high in potassium and unless your kidneys are bad, you can't get too much potassium from food. I can understand your caution re taking a potassium supplement.

    Good luck! I hope you find some answers --
     
    Mel9 likes this.
  13. hvac14400

    hvac14400 fatty & acid : )

    Messages:
    189
    Likes:
    109
    ohai, @Mary : )

    31.10.2015
    MCV (ср. объем эритр.) 82.6 фл 80.0 - 99.0
    RDW (шир. распред. эритр) 12.9 % 11.6 - 14.8
    MCH (ср. содер. Hb в эр.) 28.4 пг 27.0 - 34.0
    МСHС (ср. конц. Hb в эр.) 34.3 г/дл 32.0 - 37.0

    24.04.2012
    MCV (ср. объем эритр.) 81.9 фл 80.0 - 99.0
    RDW (шир. распред. эритр) 12.9 % 11.6 - 14.8
    MCH (ср. содер. Hb в эр.) 29.4 пг 27.0 - 34.0
    МСHС (ср. конц. Hb в эр.) 36.0 г/дл 32.0 - 37.0

    so my mcv is on lover end, always.
     
  14. Mary

    Mary Senior Member

    Messages:
    2,894
    Likes:
    6,548
    Southern California
    Hi @hvac14400 - okay, it certainly is! As far as I can tell in my lay opinion then, your numbers are good. That's a good thing, so hopefully your B12 is okay after all and I can't explain the discrepancy with your hair analysis. It's a puzzlement! :confused::)

    Take care -

    Whoops - I just realized that it is possible to have a low MCV and still be deficient in B12, as I explained above, how taking folate alone can normalize the MCV number and so a B12 deficiency won't show up. I'm not saying you have a B12 deficiency, but it's possible. And your earlier bad reaction to it could have been from low potassium, or not. I don't know. I believe we are all lab experiments here - no one knows for sure what it is going on. I have tried a zillion different things and a few of them have worked out.
     
    Last edited: Mar 12, 2016
  15. hvac14400

    hvac14400 fatty & acid : )

    Messages:
    189
    Likes:
    109
    Last edited: Mar 12, 2016
  16. hvac14400

    hvac14400 fatty & acid : )

    Messages:
    189
    Likes:
    109
    @Mary
    p.s.
    that hair analysis was done 17.09.2014, i cut my hairs somewhere around 01.07.2014, and before sampling i stopped taking multivitamins for month or two (don't remember).

    28.06.2014
    MCV (ср. объем эритр.) 86.2 фл 80.0 - 99.0
    RDW (шир. распред. эритр) 13.4 % 11.6 - 14.8
    MCH (ср. содер. Hb в эр.) 29.0 пг 27.0 - 34.0
    МСHС (ср. конц. Hb в эр.) 33.6 г/дл 32.0 - 37.0

    so here you go - mcv is a little higher without multi, so they probably work in some extent. and that was ordinary bi's - not coenzymated version (cyano).
     
  17. Deltrus

    Deltrus Senior Member

    Messages:
    271
    Likes:
    356
    @hvac14400 That is a pretty good brand, just methyl and adenosylb12 should be taken sublingually. And some people need like 5-10 mg of each per day until the deficiency is treated.

    I'm not sure if this website works for you, but this is what I recommend, a multivitamin with b vitamins, methylb12, adenosylb12, methylfolate. The multivitamin ensures you aren't low on trace minerals like copper, boron, manganese, selenium etc and is fairly cheap. The stuff I linked costs a bit more overall, and is only 60 days worth compared to 240 in the complex you linked. But I think it is the best bang for your buck. At least if you do it this way, with a comprehensive multivitamin and the right doses, you wont regret back and wonder if you would have gotten results with a better protocol.

    Personally my first b complex didn't do anything. I actually didn't get a result until I had a b complex with 50mg b2 rather than 25mg. Apparently some people need to take b2 alone / in a higher dose because the high amounts of other b vitamins deplete b2, and then the doses are so high that your body can't store 90% of them and you just pee out all your b2. I also started taking 100 mg b2 separately but it might have not been necessary, but it seemed to make the other b vitamins more effective.

    This thread lists all the things which can go wrong: http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/

    Oral b12 gets less than 1% absorption apparently.
     
    hvac14400 likes this.
  18. Mary

    Mary Senior Member

    Messages:
    2,894
    Likes:
    6,548
    Southern California
    @hvac14400 - Actually I question the competence of almost every other doctor I've seen, but the one who does the hair analysis is very knowledgable about health and nutrition. So I'm afraid I don't agree to ditch the hair analysis :rolleyes: But, I also know I'm not competent to interpret all of it either. But from seeing my doctor look at my results, it appears your B12 is very low, and most of your minerals are low which I think can indicate an absorption problem, maybe low stomach acid. Yeah, one more thing to worry about :sluggish: and of course I very well could be wrong here.

    A simple test to check stomach acid is to dissolve 1/4 teaspoon of baking soda in 8 ounces of water and drink it on an empty stomach. If you haven't burped within 2 minutes, it can indicate low stomach acid.

    Apart from your low cobalt number, the other reason I was concerned about your B12 was the high amount of folic acid you're taking - you said you're taking 4 mg., that's quite a bit. So with the potential to mask a B12 deficiency, and your low cobalt number, that's why I keep harping on B12. B12 is notoriously hard to absorb when taken orally, because it requires something called intrinsic factor for utilization, and if intrinsic factor is low, it inhibits absorption and metabolism of B12.

    I wouldn't worry about adding in B1 and B6, at least not right now. Although low B1 has been associated with low stomach acid .....

    These are just opinions, of course I could be wrong. But based on my experience, your B complex looks okay, I would stick with one of those, try adding b12 in small doses and work with it, seeing if it causes problems with potassium or otherwise, taking more high potassium foods if need be, and maybe eventually try adding a little B1.

    I've found it's important to do one thing at a time, so that you know what is doing what to you. So I wouldn't try a bunch of new things at once.

    Good luck!
     
  19. hvac14400

    hvac14400 fatty & acid : )

    Messages:
    189
    Likes:
    109
    @Deltrus
    long time ago i've tried this - http://ru.iherb.com/Now-Foods-B-100-250-Capsules/395
    3 caps per day, balls to the wall, lol.
    it did nothing for me tho.

    @Mary
    i started taking folate like 10 days ago - first time in my life, so it's certainly not the case of any masking going on here. maybe it's just an anomaly, like me eating 10 whole eggs year round while my Triglycerides level and Atherogenic index both are under the lower end % )

    i was worried about stomach acid too, bought this caps - http://ru.iherb.com/Now-Foods-Betaine-HCL-648-mg-120-Capsules/398
    and slowly increased amount of them after each meal from 1 to like 6 caps - got no any heartburns whatsoever. decided that this is another one anomaly with me and stopped taking them, lol.
     
  20. gregh286

    gregh286 Senior Member

    Messages:
    636
    Likes:
    909
    Londonderry, Northern Ireland.
    You ever have an amino acid urine test?
     
    Ben H likes this.

See more popular forum discussions.

Share This Page