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No inflammation, but low ATP, confused.

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by jimmy86, Aug 31, 2012.

  1. jimmy86

    jimmy86

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    Hi everyone,

    I got CFS four years ago and it all started with a severe cold.

    Now for the first time and went to a specialist in Germany and got my immune system checked. I just got the lab results today and I like to share them.

    So first the UNNORMAL ones:

    Homocystein 9.2 Normal Range < 8
    ATP 79 % Normal Range 95-100

    I also have low viral titres for EBV, and negative results for a full load of other virals (like CMV, HHV6 etc).

    There is NO sign of inflammation, TNF alpha, IL6, IL8, IL2 are totally normal. According to the doctor he triggered my immune system with an influence virus and it reacted totally normal. No sign of a TH2 shift.

    Now, I am a little confused, because I already felt like having lots of inflammation, especially at bad days. And second, I don't see, where the low ATP comes from!?! I know about the Myhill protocol, but for me her hypothesis lacks an underlying causal factor.

    The doctor proposed me to take magnesium, d-ribose, vitamind and b, and to activate the immune system with either biobran or dellimmun, or gcmaf. Do you think this is an adaquate therapy?

    Any other ideas how to raise ATP levels?

    All the best,

    Jimmy
  2. xrunner

    xrunner Senior Member

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    Hi Jimmy,
    There are a number of inflammation markers (and infections...) you haven't been tested for. I don't think exhaustive tests are even available. So it's unlikely that inflammation may be ruled out just by testing a few cytokines.
    I also had cytokines within the normal range but I have inflammation in certain tissues of my body. I don't think this can be easily picked up nor if appropriate tests are at all available. I had quite high C4a though.

    Low ATP is usually a symptom. If you sort out what really makes you ill then ATP should improve. You said it: causal factors vs. secondary ones.
    I don't want to comment on your first question but personally would: (a) check on this site how many have found that kind of mitos treatment really helpful, meaning life-changing (b) consider GcMAF if my Nagalase was high but it's probably better check with doc who has experience with this treatment (c) seek a second opinion with an experienced ME physician who has a good track record with patients.
    ggingues, jimmy86 and SOC like this.
  3. jimmy86

    jimmy86

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    Thanks xrunner for your response! Actually I am seeing one of the only CFS specialists in Germany, who also uses GcMAF in accordance with KDM.
    What made me confused, is that the common CFS patient does have abnormalities even in the more standard immune tests.
    I think I will go and try GcMAF, I am still waiting for my Nagalase levels.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Jimmy,

    If you have high nagalase and low inflammation, you might do well with GcMAF. I have taken it for over a year.

    Also, somewhere on this site, richvank (Dr. Rich Van Konynenburg) explains in detail the theory behind the methylation protocol and why normalizing methylation should raise ATP.

    Best wishes,
    Sushi
    jimmy86 likes this.
  5. richvank

    richvank Senior Member

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    Hi, Jimmy.

    With high homocysteine and low ATP, I think it is likely that you have a partial block in your methylation cycle. Homocysteine is in the methylation cycle, and is supposed to be converted to methionine and cystathionine. The first is in the methylation cycle, and the second is in the transsulfuration pathway, leading to cysteine and to the synthesis of glutathione.
    ATP is produced mainly by the mitochondria, so low ATP suggests mito dysfunction. In the GD-MCB hypothesis, mito dysfunction is caused by the vicious circle involving the partial methylation cycle block and glutathione depletion.
    You can find out more about this model by viewing this video:
    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/${weburl}
    Best regards,

    Rich
  6. SOC

    SOC Moderator and Senior Member

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    My TNF alpha, IL6, IL8, IL2 are totally normal, too, but my TNF beta and TNF R11 are low and my IL 1beta is high. I also have other cytokine abnormalities such as a very low IL23. You might want to consider whether you have a TH17 issue rather than a TH1/TH2 issue.

    I agree with xrunner, that having several normal cytokine numbers doesn't mean you don't have inflammation.

    Plenty of PWME don't have abnormal results on the common immune tests, so you're in good company. :) If your doctor can do them, you might ask for some of the tests Dr Klimas (an immunologist) does like NK cell function (not number), CD-4, and CD-8.

    If your CMV or HHV-6 titres are high, you might want to consider Valcyte treatment. Dr Lerner and Dr Montoya seem to be the docs who know the most about it currently if you want to look it up.
    jimmy86 and heapsreal like this.
  7. rlc

    rlc Senior Member

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    Hi Jimmy, have you had your vitamin D levels checked? You need vitamin D to absorb phosphorus, and you need phosphorus to have healthy ATP. This is why vitamin D deficiency causes fatigue, phosphorus doesn’t get to the ATP.

    Don’t know how up to date your doc is on vitamin D, the old research said levels below 20 ng/ml (50 nmol/L) meant that the patient was deficient, but new research says that optimal levels are 50 ng/ml (125 nmol/L) It can take a course of 50,000 iu tabs to get to these levels.

    Causes of high homocystein are listed here http://en.diagnosispro.com/differential_diagnosis-for/homocysteine-serum-lab-increased/14546-154.html

    Have you had B12 and folate tested? Again the reference ranges for these are too low. You want your levels to be in the middle to upper part of the referance range. B2 (Riboflavin) and B6 (Pyridoxine) deficiencies also cause high Homocystein, so your doc might be on the right track with saying take more Bs.

    High Homocystein can be a major warning sign of heart problems, so make sure that your doc has checked you for this just in case.

    High Homocystein is also a sign of Hypothyroidism, again the labs are still using reference ranges that are wrong and out of date. Most labs say TSH above 5 means you have Hypothyroidism, but knew research says that levels above 2.5 mean you have hypothyroidism, so double check your TSH levels and see if they are under 2.5.

    Have you had CPK and ESR done to check for inflammation?

    On the whole I’d say your doc is probably on the right track saying take vitamin D and Bs, but you need to make sure that they are aware of the new reference ranges, almost all doctors aren’t, if you only get your levels to the lower end of the old reference ranges for vit D, B12 and folate it probably won’t be enough to solve the problem.

    If vitamin D, B12, Folate or any other vitamin and mineral are low on tests get tested for celiac if this hasn't already been done.

    Hope this helps

    All the best
    jimmy86 and ggingues like this.
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Have you heard of Low Dose Naltrexone (LDN)? Might be worth a look at.

    GG
    Sherlock likes this.
  9. jimmy86

    jimmy86

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    Thanks everyone for your support :) and your ideas!!!!!!
    I will definitely have a look at the methylation cycle, Rich!
    NK cell function is fine, CD-4 and CD-8 not yet checked yet. CMV and HHV-6 are actually negative. I think I haven't said that correctly above.

    Vitamin D is 37,9 ng on a range from 30 to 80. So it could be improved.
    Nop, neither B12, nor CPK, ESR has been checked.

    Okay, I will have a look at it.

    Do you think it makes sense do activate my immune system?
  10. Dolche

    Dolche Dolche

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  11. Dolche

    Dolche Dolche

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    Rich,

    Any thoughts on high dose vitamin c iv?

    Thks

    Julia
  12. rlc

    rlc Senior Member

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    Hi jimmy 86, RE

    Get them tested as soon as you can, and make sure that folate is tested as well, a lot of doctors believe that they don’t have to test for B12 and folate, if you are not showing changes in your blood cells called Macrocytosis, but this is not true, Macrocytosis is a very late sign of B12 and folate deficiencies and people can be very sick without this happening, Macrocytosis is also cancelled out if the patient has an iron deficiency as is often found in Celiac.

    B12 and or Folate deficiencies would explain your high homocysteine and a lot of your symptoms. Getting your Vit D higher may also help.

    ESR and CPK are the standard tests for inflammation so these should also be done.

    If B12 and folate are low it is easily fixed, but make sure that they get your levels above the middle of the reference range!

    All the best
  13. jimmy86

    jimmy86

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    Hi everyone,

    so my doctor got back on me, and advised me to take biobran for the next 8 weeks, and if it does not have any effect try GcMAF. Did anyone of you already try biobran (or did anyone try dell immune, which contains isoprinosine?)?

    Second, the reason for the low ATP for him could be glutathione depletion. He advised me to supplement it with NAC. However, I have read that supplementation of glutathione is not what you should do, since then the body does not start producing own gluathione but relies on the supplements. So I'd rather try to have a look at what rich said and at the same time bring my homocysteine down with Vitamine B and folate. Any thoughts on that?
  14. rlc

    rlc Senior Member

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    Hi Jimmy, my thoughts are before you try taking different kinds of things get B12 and folate tested, this will tell you if you need to be taking more suppliments and what kind of doses you need, B12 deficiency which does cause high homocystein can be very serious if your levels are very low and needs to be treated with a course of injections to get levels higher quickly or else it can lead to perminant damage.

    If you have had CFS like symptoms for four years and you still have not been tested for B12, ESR and CPK (and Folate??) Your doctors has not been testing you properly to rule out other altenative diagnoses. These tests have to be done and your high Homocystein should lead to an investigation into the health of your heart as well.

    So my view is to start with getting the tests done that you should have had done four years ago and see what the results say, and then make decissions based on the test results.

    Hope this helps

    All the best
    jimmy86 likes this.
  15. jimmy86

    jimmy86

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    Thanks rlc! I went through my old lab tests, and indeed ESR and CPK have been done and reported to be in the normal range. I will definitely ask my doc to test B12, folate next time, but this can take a while. In the meantime, I think it does no harm to start with B12 and metafolin supplementation (as in the Freddds protocol). I also decided not to boost my immune system at this point, but start a trial with inosine in 4 weeks or so. If that does not work, I might have a look at gcmaf.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Jimmy,

    If you get B12 and folate tested make sure they are doing the right test. Total B12 will not be a helpful measurement for this patient community--but that is usually what they do. The same for folate--they are not likely to test the active forms. You need to use specialty labs for this sort of testing.

    Sushi
    jimmy86 likes this.

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