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CoQ10 deficiency related to multiple ME/CFS symptoms and early mortality

Discussion in 'Latest ME/CFS Research' started by shrewsbury, Dec 21, 2009.

  1. Suzy

    Suzy Guest

    EXAtest

    Thanks Maxine, I did actually have that done a few years ago and my potassium was at the bottom of the normal range at that time. Surprisingly, magnesium was normal.

    Just wontering if I'm overshooting with some of the stuff I"m doing.

    Suzy

     
  2. Hysterical Woman

    Hysterical Woman Senior Member

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    Overshooting?

    Hi Suzy,

    What do you mean about overshooting? Taking too many supplements/med? Doing too much testing?

    If you get some testing done, please let us know what your potassium values (and any others) are.

    Take care,
     
  3. Suzy

    Suzy Guest

    overshooting with supps

    A year ago I felt very deficient and really started working on my nutritional status. I wonder if I've overdone it and taken too much veggie broth, too many supps.

    Testing - I wish I could do them all!!

    Suzy
     
  4. Hysterical Woman

    Hysterical Woman Senior Member

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    Suzy


    Hi Suzy,

    Don't beat yourself up! We all do what we think is best for us at any given time. Sometimes you get new information and what you are doing will change.

    Supplements seem to be a slippery slope for many of us. Some definitely make me worse, so I try to start them in isolation as much as possible.

    Hopefully the testing will help some and you can feel that you are focusing on what your body needs most. Keep us updated.

    Take care,
     
  5. Sing

    Sing Senior Member

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    Thank you so much, Maxine and Klutzo, for your helpful information, and at least, informed judgments about calcium, magnesium and potassium. This is the best we can do right now, plus seeing how our bodies respond. I am going to get right back on Magnesium maleate. I especially value the guess about the caveman diet, and what that balance might have been. I feel that my body is an ancestral type, geared to those simplicities. This gives me a good model to be aiming towards!

    Cecelia
     
  6. Suzy

    Suzy Guest

    Rich - blood pressure - cardiac output

    Hi Rich,
    I have been reading Dr. Myhills book on CFS and she mentions that Dr. Peckerman says that low cardiac output causes low blood pressure.

    Are you saying tht low cardiac output would result in high blood pressure ?

    Suzy

     
  7. richvank

    richvank Senior Member

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    To Suzy re: high blood pressure

    Hi, Suzy.

    No, I was responding to a question from Chris, who reported that taking Co Q10 together with methyl B12 was producing high blood pressure.

    Most PWCs do have low blood pressure. I think it's a combined result of low cardiac output, due to diastolic dysfunction and low total blood volume (which in turn results from "mild" diabetes insipidus, which is not the same as diabetes mellitus), and dysfunction of the HPA axis, which I think is caused in CFS by glutathione depletion in the pituitary, which interferes with proper formation of ACTH.

    Best regards,

    Rich
     
  8. Countrygirl

    Countrygirl Senior Member

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    Question for anybody

    Hi folks,

    Can anyone explain the following to me please:


    For most of the three decades that my lurgy has been present, I have had low blood pressure. I have not been able to remaining standing without keeling over. At times, it is so low I cannot even sit up in a chair without fading out. However, this year it has soared. At best it's about 185/80. It spikes up to 230/120. (My family suffer from high blood pressure.) A doctor who specialises in M.E. told me that you can't have the illness if you have high blood pressure. :confused: Well, I have and I think others here have found the same.

    The strange thing is that my brain can feel like it is still deprived of blood - I 'fade out'. The M.E.-friendly doctor I unofficially have access to says that the heart probably isn't able to pump to the brain. My question is: if the BP is so high, surely it must, even though it feels that it is not. Is it possible to have high BP and low circulation in the brain?? Any answers folks....please. :)
     
  9. klutzo

    klutzo Senior Member

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    blood pressure

    Dear CountryGirl,
    I don't remember anything about blood pressure in the symptoms and signs list used to qualify for the CFS diagnosis.

    I can only give you my personal evidence that it is possible to have high blood pressure and low blood perfusion to the brain at the same time.

    I've been sick for 24 yrs., since I was 34 yrs. old. I developed high blood pressure in my early 40's, just like all the other adults on both sides of my family, except that only one drug out of 11 that were tried would lower it at all, and that is the anti-seizure drug, Clonidine. My heart doctor feels that alone is proof that my autonomic nervous system is involved in my high BP. Then there is the spiking. Like you, I've had mine go as high as 230/114, even with a high dose of the drug, usually when I am having attacks of tachycardia or arrhythmia. Mine is also much higher when I lay down, a condition known as malignant supine hypertension.

    In my mid-forties I had a lot of brain testing done, including a BEAM scan, which is similar to a PET or a SPECT. The scan showed I had hypoperfusion of blood to all the areas of the brain you expect to see having low blood flow in this disease.

    So, I have labile high blood pressure, which is definitely a sign of Lyme Disease, which I also have, and I have hypoxia to certain areas of the brain. It is possible to have both at one time.

    If your doctor knows his/her stuff and feels this is not possible with CFS, then I would suggest Lyme testing, just to be sure. The overlap between CFS, FMS and Lyme is huge, IMO..

    Here's hoping 2010 will be a healthier year for all of us,
    klutzo
     
  10. Countrygirl

    Countrygirl Senior Member

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    Hello Klutzo,

    Thanks you for your very helpful and interesting post. :)

    The doctor says that some of the signs and symptoms of M.E. are due to low B.P. In other words, she is saying she believes that you cannot have the diagnostic symptoms without low B.P. Our experience contradicts this.

    This is what I needed to know because this is what seems to be happening. How is it scientifically explained? This is important if I am to convince my G.P. I have just found a reference to a paper written by Efimova et al from the Russian Institute of Cardiology called: 'Brain perfusion and cognitive function changes in hypertensive patients'. This paper says that high B.P. causes low brain function. Interesting!


    We are the same age, Klutzo. I reached that figure yesterday! :D

    Great information. Thanks, Klutzo. This will be useful when I see my GP about this problem.


    The doctors here do not believe in Chronic Lyme. They have just been notified by the CMO that M.E. patients in particular are given false diagnoses of Lyme. :mad: How did you find out if you have hypoxia in the brain? No testing permitted here in case it gives the patient the idea that they have something physical causing their symptoms. Heaven forbid!! :eek::p

    Ditto above. ( Sigh! )



    Many thanks, Klutzo. Happy New Year to you.

    Best wishes,

    C.G.
     
  11. Hysterical Woman

    Hysterical Woman Senior Member

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    Countrygirl/Klutzo

    Hi Guys,

    Countrygirl, Dr. Cheney also says in his cardiac hypothesis video that it is unusual for a CFS patients to have high blood pressure. He gives some brief information on exceptions - one being long strong family history of hpb, but I didn't come close to catching all that he said.

    For myself, I currently have close to normal blood pressure after going thru a period of hbp.

    There are some amazingly smart people on this list so I am sure you will get some help here.

    Good Luck,

    Maxine
     
  12. Hysterical Woman

    Hysterical Woman Senior Member

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    C.G./chronic lyme

     
  13. Countrygirl

    Countrygirl Senior Member

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    Maxine/Klutzo

    Thanks Maxine and Klutzo for your information and advice. That is really helpful. I still have questions, though. Does anyone else have any info on hypertension (my 'new' (family) problem) and brain hypoperfusion? I have heard somewhere :confused: that it is. Somewhere :eek: :confused: I also read...on one of these threads...that it is possible to have low cardiac output and hypertension :confused:

    I certainly have stopped having blackouts, since the BP leapt out of my boots. I want to avoid BP meds, though. :p

    Anyone have answers to the above, please?

    Thanks everyone.
     
  14. Hysterical Woman

    Hysterical Woman Senior Member

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    C.G./High BP

    Hi C.G.,

    Have you read this thread?

    http://www.forums.aboutmecfs.org/showthread.php?t=1968&highlight=high blood pressure

    I also wanted to avoid bp meds. I got great results from taking magnesium. However, as I have posted on other threads, I believe I had a mg deficiency for many years prior to onset of CFS.

    HTH,
     
  15. Countrygirl

    Countrygirl Senior Member

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    Thanks Weldman

    Thanks Weldman. I'll go and take a look. :)

    Best wishes,

    C.G.
     
  16. klutzo

    klutzo Senior Member

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    BP and brain hypoxia

    Hi CountryGirl,
    Maxine gave you some very helpful info. :)

    I go against the grain on what they found though....I feel much more mental clarity and energy when my BP is slightly high. After all, there is a reason my body is raising the pressure....the blood is not getting to my brain. I need a little help! When my BP is as low as doctors want it, I am barely able to walk, let alone think. My best friend, who does not have CFS, stopped taking her BP meds because with her BP in normal range, she could not walk up and down the mountain she lives on to get to work, and had no energy. I share that feeling, and I can see why the very low BP so many CFSers have could be a major reason for the severe fatigue. I also think the recent lowering of the normal range for BP is a ploy by Big Pharma to sell more drugs. It worked for cholesterol (don't even get me started on this red herring!), so why not for BP? Ca-Ching $$$$$.

    I'm slow, but I get there, and I just noticed you are in the UK, so the test I had for Lyme may not be available to you, even though there is a newer version. The IgeneX western blot is considered the standard here and you can call Igenex Lab in California, and see if blood can be shipped there, but I fear it could not get there fast enough. Their number is 1-800-832-3200.

    After yrs. of dealing with Lyme and reading about it, I personally feel a trial of the appropriate antibiotics is a far better "test" than the actual blood testing anyway. The good news is that if your doctor will not give you high dose Doxycycline to see if it makes you "Herx" (symptoms get noticeably worse due to die-off of the bug), there is an herbal substitute which is just as strong and just as likely to make you "Herx", thereby confirming that some kind of pathogen is being killed. Of course, this way you don't know if it's Lyme or something else, but since doctors are not going to give you the chronic Lyme diagnosis anyway, it is my contention that it does not matter. If it makes you Herx, it can potentially make you well. I believe you can still order supplements from the USA if you pay a VAT, correct? The treatment for Lyme is called Samento, and it has the added benefit of killing a lot of other nasty things you might have as well, so even if you don't have Lyme it may help you. I took it for 4 years, and credit it with stopping my progression. You can get it from the maker's site, Nutramedix, or you can get the name brand much cheaper at www.myherbs.net.

    Incidentally, the reason my doctors accept my "chronic Lyme" is two fold. It is partly because my doctors don't know anything about Lyme and I dazzled them with my unusual test results, which actually showed pictures of Lyme L-forms in my blood under fluorescent light, a now defunct test once considered cutting edge, known as the Bowen QRiBb. The docs had no idea this was an "unproven" test and a picture was worth a thousand words to them. In addition to that, by the time I was diagnosed with Lyme, my immunity had been altered to such a severe TH2 dominance that I was highly allergic to all the antibiotics that work against Lyme, so I have never had any antibiotics, and even the dumbest doctor knows that untreated Lyme becomes chronic and progressive, so much so, that my problem has been finding doctors who don't treat me as if I'm already dead, and will still make the effort to help me, rather than doctors who don't believe my diagnosis. They do not consider herbals like Samento to be "treatment", so in this case, their arrogance works in my favor vis-a-vis their believing me.

    I share your dislike of using BP medications and I did not use them when I was in what used to be called the "borderline range". When taking HRT at menopause sent me above that level though, I weighed the risk of stroke and went with medication. I hate to say it, but your readings are definitely in that neighborhood, and medication would be better than not being around to try and solve the problem, IMO. I understand your trepidation....doctors have a tendency to give meds, and if they work, they consider the problem solved, when in fact, they still have no idea what the problem is and are just covering up symptoms. You will have to be assertive to uncover why this has started happening. Kidney function should be checked, for one example, since problems there can raise blood pressure. Are you eating a lot more salt? Taking some new supplements that raise BP, like ginseng or licorice?

    The Neurologist I was sent to for migraines is the one who insisted on the BEAM scan, after hearing I'd been declared dead of a brain injury in a car accident 10 yrs. earlier, but had never been evaluated for brain damage. He also did a QEEG, which was abnormal. Back then, I did not think I had CFS, only FMS, and I'd never even heard of Lyme. From what I've read, the SPECT is the best scan for us to have, if you can get someone to order it for you. If you look up Dr. Amen + brain you should find his website with amazing pictures of how SPECT can uncover all sorts of bran abnormalities, even including the patterns of criminal behavior!

    Happy Birthday! I am your elder by a bit, since I will be 59 at the end of February.

    klutzo
     
  17. Hysterical Woman

    Hysterical Woman Senior Member

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    Klutzo/Dr. Amen

    Hi klutzo,

    Great responses to C.G. You are a wealth of information.

    You mentioned Dr. Amen - did you see any of his specials on PBS? Pretty interesting. I find myself really wanting one of those scans! Sigh, so many theories, so little $$$$.

    Happy New Year,

    Maxine
     
  18. klutzo

    klutzo Senior Member

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    Dr. Amen

    Hi Maxine,
    Yes, I've seen two of Dr. Amen's specials on PBS, and I get his "Brain In The News" free e-newsletter. You can sign up for it on his website. It has links to articles and his blog about brain issues.

    I agree that I would just about give my right arm to have a SPECT scan, but I wonder if in the end it would alter my treatment any......probably not. It also might be very depressing to see how much my brain has deteriorated.

    My neuropsychological brain testing results were atrocious, but did not change my treatment one iota. They just made me so depressed that I did not speak to anyone, not even my husband, for two weeks, while I came to terms with how seriously my brain is injured. It was after that that I let my professional licenses go, having to face the fact that I could never work again.

    The test results did get me a much longer period between disability reviews however, ten years instead of three, and since reviews are horribly stressful, that is worth a lot.

    Also, my worst test result by far was on a test that I would expect CFSers to do poorly on, the test for sense of touch. Some of us even lose our fingerprints, I believe, due to lack of collagen or blood flow or something, and that would affect touch. I think that casts doubt on what he said about my not having CFS, covered below.

    As an interesting aside about my neuropsych testing, the Neuropsychologist who did the tests told me that in his opinion, I definitely did NOT havce CFS, since he said that CFS has a unique brain injury pattern specific to it and only to it. He said he was so confident in how unique the CFS pattern is, that he feels he could diganose CFS just from seeing neuropsych test results, without even seeing the patient!

    He insisted that my brain damage pattern was entirely consistent with the car wreck injury I had. His diagnosis was FMS, brain injury with a functional level of 45% of a normal brain, and adjustment syndrome. That last one threw me...even though I was a Psychiatric Social Worker, I'd never heard of it when I was in school. It seems it means I refused to adjust to how severely injured I am, and kept believing I could get better, in spite of evidence to the contrary. I told him I would wear that label proudly, which unnverved him. :D

    In case someone reading this is not familiar with neuropsych testing, the word "psychological" in there does NOT mean mental illness. It means it affects the way your brain works, that physical injury can affect personality, coping skills, IQ, etc. Most of what they do has to do with physical injury to the brain, which of course, can end up causing psych changes. Hope I explained that clearly enough.

    klutzo
     
  19. Countrygirl

    Countrygirl Senior Member

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    Brilliant info, Klutzo

    WoW!!! Klutzo! What a brilliant and very, very helpful reply with such a wealth of information. Thank you. I haven't had the chance to mull it all over yet, so will save the info. and carefully work through it. You are a mine of invaluable information. :) :) :)


    Thank you very much. This forum is brilliant.

    Best wishes,

    C.G.
     
  20. klutzo

    klutzo Senior Member

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    Neuropsychological testing (Icon was for the end of message-what gives?)

    Hi CountryGirl,
    I forgot to mention that Neuropsychological testing might be your best bet for proving something wrong with your brain. It does not involve any expensive machinery, like MRI, BEAM, PET or SPECT. It is quite affordable, at least over here, and as my Neuropsychologist said, there is a definite abnormal brain pattern in CFS that they can easily see on this type of testing.

    The testing is usually done over a two day period, at 3 hours per day, so you don't get too exhausted. It can make your head spin. Doing the math problems on an IQ test with no paper and pencil made me crazy, but they have to see how your brain functions, with no crutches. That touch test I failed so badly is done with a blindfold on, so your eyes can't help your brain.

    I had the testing done in 1995, so I'm sure the cost is higher now, and I apologize for being unable to convert dollars to pounds, but my copayment was about $122. By contrast, the copayment for just a plain brain MRI would easily be over twice that much. I know you don't have copayments over there, so you'd have to check this out and see how it compares.

    klutzo

    P.S. I sure wish they hadn't messed with this once perfect forum. I can barely see the teensy print when I'm typing, and the lack of borders makes my eyes float all around, trying to figure out what to look at. It's like going into the grocery store and discovering they've rearranged the entire store. Why fix something that was not broken? THe mad icon was supposed to go here. I guess that is now messed up too.

    klutzo
     

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