Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Extremely low Co-Enzyme Q10 results

Discussion in 'General Treatment' started by Lucinda, Mar 19, 2011.

  1. Lucinda

    Lucinda Senior Member

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    Hi

    I've recently started seeing Dr Myhill, and am trying to make sense of all the results I have had back (so far I've had back thyroid - which showed low T4, and mitochondrial, which showed mito failure and gave a score of 0.32 - meaning moderate to severe).

    One of the things that surpised me though was my CoQ10 result. Dr Myhill wrote levels were: "extremely low at just 0.12umol/L (0.55-2.00) - indeed from all the results I have seen I think this is a record low".

    Why would my CoQ10 be so low? Has anyone else had a CoQ10 score like this?

    She also wrote that: "This may well be implicated in the heart rate variability".

    I have had heart issues throughout my illness - a 24 hr ECG showed my heart rate varies from as low 55 bpm, to as high as 143 bpm in a day (with little stress or activity to explain such variation). I also get frequent palpitations, and a sort of chest discomfort. Often my racing heart is also accompanied by breathing problems (either breathing too little or too much).

    Since I've heard Co-Q10 is also linked to heart issues, could low levels help explain such problems? Could it also maybe explain my wired/agitated problems? As I usually get discomfort in my chest when I'm wired/agitated.

    Also, she has written to my NHS doctor recommending that my doctor prescribes CoQ10 in the form of 'ubidecarenone' at a dosage of 400mg (split up into 200mg and 100mg dosages three times a day). Has anyone else tried this form of CoQ10? Does the form it is taken matter much? And should I begin on a small dosage and build up? And should I take CoQ10 on it's own or with other supplements? Dr M has recommended other supplements too but I'm only taking a few so far.

    Sorry about all the questions! I still struggle to understand all this.

    xx
     
  2. Mij

    Mij Senior Member

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    Hi, I had my CoQ10 level tested 9 years ago and it was in the moderate/low range at 50%. Recently my intergrative and functional doctor recommended I take PPQ(Pyrroloquinoline quinone) in combination with CoQ10. Perhaps you can mention this to Dr.Myhill since there is good research on it.

    I'm not familiar with the "ubinecarenone" form of CoQ10 so I can't comment.

    I used to have a racing heart beat and found I was very low in Magnesium, I know Dr.Myhill is an advocate of magnesium injections. This really helped my heart and feeling out of breath.
     
  3. Lucinda

    Lucinda Senior Member

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    Thanks Mij.

    I do have low magnesium too and Dr M has recommended magnesium injection. She's not allowed to give them at the moment though as the GMC have banned her (and B12), but she has appealed this, and if she wins she's going to give me magnesium and B12 injections. Am hoping they will help!
     
  4. Mij

    Mij Senior Member

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    Hi Lucinda, she's banned from giving injections? geez. I live in Canada and at first my doctor didn't want to give me the amount of shots I wanted but after he saw how much better I felt we added taurine to the mix as rec'd by Dr.Cheney. What a difference that made! I asked my doctor to show my friend how to inject me so I wouldn't have to come in the office all the time and at first he was like "no way", but now he'll give me a script anytime I want it :thumbsup:

    I hope she wins this appeal because it's soooo helpful!
     
  5. Lucinda

    Lucinda Senior Member

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    Yeah. Not sure how much you know about Dr Myhill and what it's like for ME sufferers in the UK, but she is the main doctor over here who offers real help to sufferers. At first she was an NHS doctor, but couldn't carry on as one as all of the rules left her unable to actually help her patients. So she became private and the General Medical Council were still on her back and eventually took her license as a doctor away from her.

    She has her license back now though, but is not allowed to give B12 and magnesium injections. No idea why. So stupid.

    I sure hope she wins the appeal as I have heard of lots of people benefitting from these injections, and there is no way the NHS will give them as it doesn't go along with their guidelines for ME/CFS patients.
     
  6. garcia

    garcia Aristocrat Extraordinaire

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    Hi Mij, just out of interest what do your shots contain?
    Many thanks,
    garcia.
     
  7. Mij

    Mij Senior Member

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    Hi Garcia, it's magnesium sulfate a standard 50% solution. First you draw up cc of the magnesium into the syringe and then draw up 1 ccs of taurine, the taurine is compounded at 50 mg/cc. The taurine enters the muscle first so that you don't feel the stinging sensation from the magnesium. I find them totally painless but some people add a little local anesthetic.
     
  8. richvank

    richvank Senior Member

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    Hi, Lucinda.

    Methylation is required to make coenzyme Q10, and nearly all PWMEs/PWCs who have been tested have a partial methylation cycle block. Dr. Myhill has a section on her website about the methylation cycle in ME/CFS, and she suggests a set of supplements to treat it, which is similar to the Simplified Treatment Approach that I have suggested. Perhaps you could ask her about that. Supplementing it can be helpful, but ultimately it is necessary to lift this partial block in order for the body to make its own coenzyme Q10, as well as carnitine, creatine, and choline, which also require methylation for their synthesis in the body.

    Best regards,

    Rich
     
  9. Lucinda

    Lucinda Senior Member

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    Thanks Rich :)

    I have been very interested in the methylation stuff after you commented on my post a while back on my agitation/wired issues.

    Yes I will ask Dr Myhill about her approach to the methylation cycle next time I talk to her.

    Thanks again, you're always very helpful. x
     
  10. pken

    pken

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    Hi Lucinda,

    I'm pretty sure that the form you've been prescribed is regular coQ10 - just the medical name has been used because Drs like that kind of thing. A bit like a prescription of acetyl-salicylic acid being just aspirin! For what it's worth, the "better" form of coQ10 is called ubiquinol but I don't think that's available on the NHS.

    You don't take statins (cholesterol medication) do you?
     
  11. Lucinda

    Lucinda Senior Member

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    Thanks pken.

    And no, I don't take statins, and never have. In fact, before the mito test was done I wasn't on any prescription drugs at all. I was actively avoiding them and mainly relying on acupuncture to reduce symptoms.
     
  12. pken

    pken

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    Oh well, bang goes that theory! To elaborate for others, statins seem to reduce non only cholesterol but also coQ10. Are you on a low fat diet/do you try to avoid things that are higher in fat?
     
  13. Lucinda

    Lucinda Senior Member

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    Nope never had a low fat diet! In fact I eat quite a lot of unsaturated fats (nuts, humous, olive oil, fish, etc).
     
  14. shannah

    shannah Senior Member

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    Neuro Endocrinol Lett. 2009;30(4):470-6.

    Coenzyme Q10 deficiency in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is related to fatigue, autonomic and neurocognitive symptoms and is another risk factor explaining the early mortality in ME/CFS due to cardiovascular disorder.
    Maes M, Mihaylova I, Kubera M, Uytterhoeven M, Vrydags N, Bosmans E.

    Maes Clinics, Antwerp, Belgium. crc.mh@telenet.be

    Abstract
    INTRODUCTION: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a medical illness characterized by disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways.

    METHODS: This paper examines the role of Coenzyme Q10 (CoQ10), a mitochondrial nutrient which acts as an essential cofactor for the production of ATP in mitochondria and which displays significant antioxidant activities. Plasma CoQ10 has been assayed in 58 patients with ME/CFS and in 22 normal controls; the relationships between CoQ10 and the severity of ME/CFS as measured by means of the FibroFatigue (FF) scale were measured.

    RESULTS: Plasma CoQ10 was significantly (p=0.00001) lower in ME/CFS patients than in normal controls. Up to 44.8% of patients with ME/CFS had values beneath the lowest plasma CoQ10 value detected in the normal controls, i.e. 490 microg/L. In ME/CFS, there were significant and inverse relationships between CoQ10 and the total score on the FF scale, fatigue and autonomic symptoms. Patients with very low CoQ10 (<390 microg/L) suffered significantly more from concentration and memory disturbances.

    DISCUSSION: The results show that lowered levels of CoQ10 play a role in the pathophysiology of ME/CFS and that symptoms, such as fatigue, and autonomic and neurocognitive symptoms may be caused by CoQ10 depletion. Our results suggest that patients with ME/CFS would benefit from CoQ10 supplementation in order to normalize the low CoQ10 syndrome and the IO&NS disorders. The findings that lower CoQ10 is an independent predictor of chronic heart failure (CHF) and mortality due to CHF may explain previous reports that the mean age of ME/CFS patients dying from CHF is 25 years younger than the age of those dying from CHF in the general population. Since statins significantly decrease plasma CoQ10, ME/CFS should be regarded as a relative contraindication for treatment with statins without CoQ10 supplementation.

    PMID: 20010505 [PubMed - indexed for MEDLINE]

    http://www.ncbi.nlm.nih.gov/pubmed/20010505
     

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