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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. Freddd

    Freddd Senior Member

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    Hi Rich,

    freddd's protocol reportedly has been developed by laborious trial and error

    There was a lot of targetted trial and only small amounts of error. I did a lot of reading before adding anything new and had good reason for trying each addtional thing. The glutathione precursors were the only real error in six years. Except that not all brands are equal, not all injection solution preparations are the same, even from the same compounding pharmacy. I don't know of any theory that would weed them out in advance or even expect them. There was a lot of debugging; finding why "X" didn't work and correcting it until it did work. That was laborious. Systematic testing of injections from 1mg to 25mg until finding the shape of the response curve, the color of urine, correspondence with sublingual doses, responses and urine color. A new one now is to correlate the dropoff of effectiveness to minutes of light expsosure at a certain intensity. As some have said disparangingly, "That's just engineering". However, the "just engineering" is why the system works quite predictably and reliably. If software was devoloped the way medications typically are we would have software that worked "a statistically significant percentage of the time for a statistically significant percentage of the people. The IRS would love it when you explained that you are one of the 33% for whom accounting software doesn't work. And being in the 1/3 in which it doesn't work aall is the pits.
     
  2. klutzo

    klutzo Senior Member

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    To Fred and Rich - a couple of questions

    Hi Fred and Rich,
    Happy Holidays. Thank you both for sharing your expertise with us here.

    I also had a noticeable rise in my already high blood pressure on my usual dose of Ubiquinol on the B12 protocol, so I cut it down to once a week, and took that day off from B12. I thought I should get at least a little COQ10, since I think I have early CHF symptoms (some days I get swollen legs from the knees down if I keep them down all day, feeling like I may pass out if I stand too long, short of breath going up even slight hills, stairs, etc., despite exercising 3 X weekly) My echos show 3 slightly regurgitating valves, but my ejection fraction is great. Another reason I think those symptoms are early CHF is Cheney's list of how CFS progresses if it's not halted. CHF is the second to last symptom he lists before death. The third to last symptom is failure of the exocrine pancreas, which I have had for two years now. I have to take more than 600 prescription enzymes per month to be able to digest any food at all. So, assuming Cheney is correct, CHF is the next logical step on the way downhill.

    Here are my questions:

    1. How does urine color figure into this? What does it mean? After taking the B12's mine is bright yellow. Is that good or bad?

    2. Do the usual heart tests ever show up abnormal with these problems? My heart doctor says there is no way to bill insurance for the echo tech's time or the second echo, if she does Cheney's procedure of a regular echo, followed by my standing for 15 minutes and then doing a standing echo to see the diastolic problem. He did not seem to know much about the newer impedence cardiography method and insisted if I had diastolic dysfunction, it would show on my regular echos. My ejection fraction runs between 65-69 always. I do, however, have flattened or dropped S-T wave segments, and have had them ever since the second year of my illness in 1988, when I developed tachycardia and an MVP. Over the years my tacyhcardia evolved into PSVTs, which make plain tachycardia look like a day at the beach.

    3. Do you think the diabetes insipidus should be treated? Dr. Teitlebaum says not to treat it, because it is a mild form of it, and the drugs are quite strong. I have two friends who took the drug for this, desmopressin. One did not pee for 24 hours and was afraid to take it again. The other did not pee for more than 48 hrs. and started throwing up water, which could have become fatal, so he stopped taking it too. Though I have to pee 15-20 times a day on average, including 4-5 times in the night, my doctors have refused to test me for this, saying my electrolytes would be abnormal if I had it, and they are not. My one friend who was dx'd with it did have abnormally high calcium, and she was only peeing 8 times daily.

    Thank you,
    klutzo
     
  3. Freddd

    Freddd Senior Member

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    Hi Klutzo,


    1. How does urine color figure into this? What does it mean? After taking the B12's mine is bright yellow. Is that good or bad?

    Neither. It just means that one kind of kidney tubule is functioning, the kind that removes cobalamin. B12, all forms, are strongly colored. A small amount of it in urine makes the urine look more yellow. A larger amount makes it look more orange or towards pink or red depending upon quantity.

    Incidently I don't think thaty the CoQ10 had anything at all to do with serum level of b12 so stopping the b12 for one day won't affect the blood pressure. It seemed more about the degree of healing than any fluctuations of b12 serum level.
     
    Ailsa likes this.
  4. richvank

    richvank Senior Member

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    Best regards,

    Rich
     
  5. klutzo

    klutzo Senior Member

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    Thanks Fred and Rich

    Dear Fred and Rich,
    Thank you both for the answers to my questions.

    My heart doctor did mention he thought my heart damage was probably caused by a virus, either CMV, which I have evidence of having been exposed to in the past, or HHV6, but he considers it a past problem, not a current one.

    I read quite awhile back that some researchers from Newcastle Univ. were trying to get the flat S-T waves made into a required criteria for CFS diagnosis, since they found it in 100% of CFS patients tested, and this was confirmed by joint research done later by the Univ. of Osaka and the Univ. of Colorado. My heart doctor continues to insist that flat or dropped S-T waves by themselves mean nothing at all. He is the best cardio around here and saved my husband's life when another cardiologist almost killed him, so a second opinion would be a waste of time, and I am too sick and too poor to travel. I'll have to do what I always end up doing, treating it myself as best I can with supps. I am already on two heart drugs for the other problems.

    My blood pressure did go back to normal on the days I skipped the B12, darned if I know why. Maybe it had to do with some other vitamins I did not take, since we take every Sunday off from supplements to give our bodies and wallets a rest.

    I can't take extra salt because it makes the leg swelling worse, even though it is not pitting edema, and that makes no sense to me, with what limited medical background I have.

    Thanks for the help,
    klutzo
     
  6. Sing

    Sing Senior Member

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    Mild Diabetes Insipidus

    Dear Klutzo,

    I only want to comment on the "mild diabetes insipidus". An endocrinologist called mine, "Partial Central Diabetes Insipidus". Dr. Byron Hyde of www.nightingale.ca mentions this as a common symptom in ME by the way.
    I tried the desmopressin too since I was peeing 19 x a day about, but it made me feel sick, so I stopped. As long as I can get enough water I am safe. It could be wise to wear a medic alert bracelet. When I get the throw ups, the
    "24hr bug", I get horribly dehydrated and my blood pressure goes way up. My doctor told me to get to the hospital the next time it happens--due to the dehydration.

    Avoiding sweets or high carbohydrates in the evening, and no alcohol of course, has enabled me to get through the night with maybe only one visit to the bathroom.

    I hope you find your way with these symptoms!

    Cecelia
     
  7. klutzo

    klutzo Senior Member

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    Diabetes Insipidus

    Hi Cecelia,
    Thanks for the info. I don't eat anything after dinner, since I have wicked bile reflux gastritis, a nasty precancerous situation that occurs in some unlucky people after gallbladder removal. I cannot tolerate even tiny amounts of alcohol. But, I do have to take medications at 9:30 pm, 11 pm, 3 am and 6 am! All of those require me to drink adequate water, esp. since my tummy is so upset already, so you can see why I pee so much at night.

    I agree about how important it is to drink enough, even though it makes you pee more. I did not think I drank that much until I had to do several 24 hour urine collections for lab tests and discovered that even by depriving myself of water until I was so thirsty I could not sleep, I could not fit 24 hrs. worth of urine in one of those lab containers. I have to have two of the 24 hr. urine containers, and if allowed to drink normally, will come close to filling them both.

    I do have a Medic Alert bracelet for my many other diagnoses, but primarily because I take meds that would cause life-threatening withdrawl if I miss doses. I have not added the D.I. diagnosis to my Medic Alert info, because I've not been formally dx'd with it, due to refusal by all my doctors to run the tests for ADH and aldosterone since my electrolytes are normal, but I may go ahead and cheat and add the dx anyway to protect myself. Thanks for reminding me.

    For another point of view on the cause of this, I had a hair mineral analysis done by an Integrative doctor. She was looking for heavy metal poisoning, which she did not find, thank goodness. However, the report came back saying that even though I had no deficiency in either CA or Mg, I had a severe imbalance between calcium and magnesium that would most likely result in bladder contraction, so that my bladder would hold less urine and I would be peeing a lot. I know this is at least partly true, since I used a measuring cup to pee into for those 24 hr. urine collections, so I know my bladder capacity is 1/2 cup. Normal people have a 2 cup capacity. From my reading, I learned that in Lyme Disease and in Fibro, calcium supps. should not be taken, since it builds up in arteries and soft tissues, not bones, where it belongs. I also eat non-fat dairy as my main protein source, so I get more calcium from food than most people. So, despite having osteopenia, I stopped taking extra calcium and am relying on vitamin D and magnesium to keep my bones. So far, there is no improvement in bladder capacity. My red cell magnesium is above normal range, and I take 510 mgs. daily already. You might try peeing in a measuring cup just to see if your bladder capacity has been affected by the muscle contraction effect of calcium.

    I suppose it is possible, since my doctors insist I would have abnormal electrolytes if I had any degree of diabetes insipidus, that the CA/MG imbalance is the true source of my problem. Now I just have to figure out how to fix it.

    klutzo
     
  8. BEG

    BEG Senior Member

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    diastolic dysfunction and CoQ 10

    Gracenote, I have the diastolic thing going on as well. So what does that have to do with CoQ 10? Perhaps I missed something.:confused:

    I was taking corvalen powder, magnesium, L-carnitine, and CoQ 10 before Dr. Cheney said they were bad, although these substances were recommended by several well-known doctors, including Cheney.
     
  9. Sing

    Sing Senior Member

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    Dear Klutzo,

    (I like your name.) I am sorry your have that reflux condition, and also that you have to get up at night to take medications--yikes.

    The thing about the diabetes insipidus issue is that dehydration can be life threatening and we will get there much faster than a normal bodied person, so that is a good reason to list this on a Medic Alert bracelet. We are thirsty because we are peeing out bodily fluids at a fast clip.

    When I did the 24 hr urine, I had over two of those big containers--

    No, I don't have a small bladder capacity, fortunately.

    If you can cite me a reference for more info about why not to take calcium supplements with Fibro and Lyme, I would like to have this. Some doctors have considered that I have one or both of these too, but the best clinical description of my condition is ME/CFS--with all the muscle aches, tight fascia and now galloping osteo arthritis too, I might add.

    Cecelia
     
  10. Hysterical Woman

    Hysterical Woman Senior Member

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    Cecelia


    Hi Cecelia,


    Please forgive me for jumping in here. I don't know about lyme, but I suspect the fibro situation comes from the fact that calcium can make muscles rigid. Conversely, magnesium can relax them. It's that complicated dance between minerals again. Also, if you have too much calcium in your system, you can actually block magnesium absorption. It's weird because magnesium is needed for calcium absorption. Hope that makes sense.

    Here is a link to paper that discusses mg/ca interactions.

    http://www.ncbi.nlm.nih.gov/pubmed/10612088

    Take care,

    Maxine
     
  11. Freddd

    Freddd Senior Member

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    Hi,

    I just want to jump in here and say that if potassium gets out of kilter it too can produce muscle spasms with both too little and too much. Also, too little calcium can cause spasms. The spasms produced in each case are different; too much it happens during contraction and too little during relaxation such as lying in bed. If a person is traking the active b12s and methylfolate, any of those and several other supplements may trigger a sudden round of healing causing hypokalimia, sometimes within 3 days.
     
  12. Hysterical Woman

    Hysterical Woman Senior Member

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    Thanks Freddd

    Thanks for the information Freddd.

    The whole mineral balance thing seems to be critical.

    Maxine
     
  13. klutzo

    klutzo Senior Member

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    CA/MG in Lyme and FMS

    Maxine is right on target about the Fibro and calcium problem. Calcium can contract muscles, but it is true that too little can have the same effect and CA at bedtime can often help restless legs, which are sometimes due to severe CA deficiency. So, I would never suggest that someone who eats no dairy at all should not take supps. Of course, you can get CA from greens too, but you have to eat enough to grow floppy ears and a cotton tail!

    When it comes to Lyme, I have not seen any studies on this subject, only read articles by LLMD's in which they say that calcium supps. tend to go right into the arteries and soft tissues, rather than bones. I do not understand the science behind what is wrong that makes that happen, but I'll bet someone over at LymeNet could tell you, maybe Marnie. She is the resident biochemistry researcher over there.

    There is a large overlap between Lyme and FMS, which complicates things. Both diseases tend to result in osteopenia or osteoporosis, even in people who should be the least likely to get it, like me. I thought that was one thing I'd never have to worry about, because I was athletic all of my life, had big bones, overdeveloped muscles, did weight bearing and high endurance sports, ate dark green salads twice daily, and dairy was my lifelong number one protein source, but I got mild osteopenia as soon as menopause hit, and thanks to having taken a proton pump inhibitor for a year, and despite whey shakes and CA supps. while I was on it, I now have a moderate risk of fracture. Those PPI drugs are bad actors in so many ways.

    FWIW, I was taught when studying Naturopathy that CA is probably the worst supp. you can take. The reason being that if you have low calcium in our dairy saturated society, that is almost always due to it wrongly being deposited in arteries and soft tissues rather than bones, not to deficiency. So, if you take more in supp. form, you just deposit even more in arteries and soft tissues.
    They prefer the approach of using cofactors like vitamin D, magnesium, boron, manganese, and if necessary to rebuild bone loss, strontium, which does require you to take a minimal amt. of calcium in order for the strontium to be absorbed.
    They also point out that societies that eat almost no calcium in the diet often have little or no osteoporosis, while high calcium consuming cultures have the highest rates of bone loss. There are complicated reasons for this, and you can do some research on your own if interested. One doctor who is quite outspoken on this is Wm. Campbell Douglass, M. D., so you can look him up to read more.

    Sorry if my earlier post confused anybody. I am confused myself as to how the illnesses make this happen with calcium going to the wrong places. As I said before, I do not know if this applies to CFS/ME. I only suspect it does.

    ETA that potassium can be dangerous, so it's best to get it from foods if you can. Herbal supps. can have very high amounts, since they are often concentrated plant extracts, as I found out when I ended up in the Emer. Rm. with gut symptoms that turned out to be caused by high potassium, so high they had to clean it out of me with some awful tasting goop that caused cramping diarrhea for hours. This happened when an alt. practitioner put me on an herbal Lyme remedy that I had resisted taking for a long time, but he kept pressing me to try it......I'd had a bad feeling about it, which I should have trusted. Too much potassium can also cause serious heart arrhythmias. That's why standard supp. dosage is only 99 mgs. For comparison, a banana has 450 mgs.

    klutzo
     
  14. klutzo

    klutzo Senior Member

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    For CECELIA

    Hi Cecelia,
    I don't know how old you are, but his one sure applies to me.
    todaysseniorsnetwork.com/harmful_calcium_supplement.htm

    This scary study has nothing to do with FMS or Lyme, just CA supps. in older females and how they significantly raise heart attack and stroke risk.

    I will try to find studies relevant to our illnesses specifically tomorrow if I have time, or during my awake time around 3 am. I am about to fall asleep on the keyboard.

    Goodnight for now,

    klutzo
     
  15. Sing

    Sing Senior Member

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    Calcium, magnesium, muscle contractions

    Thank you again, Klutzo, Maxine and Fredd, for this helpful information about mineral balance. I am 60, over menopause, so my bones are losing density (some osteopenia at this point). But osteoarthritis is galloping along and bone spurs are growing larger all the time; my muscles and fascia are too contracted also. I haven't liked taking extra calcium but my former lyme doctor and other doctors all promoted it so I have, the past few years.

    Before that I ate a lot of dairy and vegetables and used to take Magnesium Maleate, which made me feel better. I think I will go back to that and lighten up on the calcium intake.

    Thank you!

    Cecelia
     
  16. Suzy

    Suzy Guest

    Klutzo - potassium

    I am getting 4,000 mg of potassium / day from food aloen and do not supplement it. THe RDI (got from Wiki, not best source I know) is 4700mg.

    Since a banana only has 450 and I'm getting 4,000mg, it seems like an awful lot. I drink 2 cups of homemade broth a day.

    WOuld getting a potassium blood test be sufficient for testing for toxicity ?
     
  17. Hysterical Woman

    Hysterical Woman Senior Member

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    Cecelia

    Hi Cecelia,

    As you know, sometimes it just mind boggling trying to figure out what to do. One person recommends one thing - swears by it and someone else swears the opposite. Hard to know what to believe.

    I want to have some mineral testing done after the beginning of the year. Hopefully that will give me some idea where the minerals in my body are even tho I know that the tests are not perfect.

    One of the problems with the CA/Mg thing seems to be that magnesium leaves our bodies more easily, at least that is my understanding. Stress, alcohol, saunas, etc, etc. can cause magnesium dumps. And calcium does seem to be a little bit easier to replace with diet than magnesium since even veggies & nuts you would think had high magnesium content don't always have that. Magnesium depletion in the soil due to lack of supplementation, and chemical fertilzers & pesticides have decreased the amount of mg in vegetables and nuts over the years.

    Then there is what Dr. Dean calls the "Calcium Distraction".

    "The irony of the calcium-magnesium story is that without magnesium calcium will not work properly. Both our current diet and tendency to oversupplment with calcium, however, make getting enough magnesium almost impossible. Research shows that the ratio of calcium to magnesium in the Paleolithic or caveman diet - the ancient diet that evolved with our bodies - was 1:1, compared with a 5:1 to 15:1 ratio in our present-day diets. With an average of ten times more calcium than magnesium in our current diet, there is no doubt about widespread magnesium deficiency in modern times." In another part of the book she discusses that excess CA in the body can block magnesium absorption.

    Having said that, please know that I am NOT a health care professional, and I would not suggest that anyone stop taking calcium or anything else they are taking if they believe it is helping them. This for informational purposes only and I am only sharing what I have read.

    Take care,
     
  18. klutzo

    klutzo Senior Member

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    Minerals

    HI CECELIA,
    Bone spurs are a classic example of what happens when calcium is deposited in the wrong places. I have four of them, and one of them in my neck is causing a painful radiculopathy to the left side of my chest and left arm, a classic red flag for Lyme. I have to do physical therapy exercises every morning to control the pain it causes or I can't breathe or use my left arm.
    I am surprised your LLMD pushed calcium! Maxine's info on the CA/MG imbalance in our diets is excellent. In addition, in Lyme, the pathogen causes Mg to be dumped in the urine almost as fast as you take it in. It has an enzyme in it called PFK that prevents borrelia from replicating, so the smart little bastards get rid of it ASAP. That is why Lymies should take many small doses of Mg daily, rather than one large one. Ditto for B vitamins, which Lyme likes to use up.

    - - - - - - - - - - - -- - - - -
    HI SUZY,
    The Emer. Rm. doctor found my overdose of Potassium on standard blood testing, so I would think the answer to your question would be yes. I do not know how much potassium is too much to take in from food, or if potassium from food would cause the same problems as from supplements. I do know that those suffering from adrenal fatigue are told to watch not to eat too much potassium and never to eat high potassium foods like bananas for breakfast.
    Herbal remedies are esp. problematic, since you usually can't tell how much potassium is in them.
    How is your blood pressure? I would think an overdose of Potassium would significanly lower it....it sure did for me.



    klutzo
     
  19. Suzy

    Suzy Guest

    potassium

    My blood pressure just now was 95/57 lying, 95/63 immediately after standing.

    It's always lowish, since before I started taking the broth. Sometimes it is 100-105.

    So, I don't think it's dropped.
     
  20. Hysterical Woman

    Hysterical Woman Senior Member

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    Suzy/Klutzo

    Hi Klutzo & Suzy,

    In addition to the standard blood testing, Suzy, you might want to consider getting a test called EXAtest since it tests minerals in tissue instead of the blood. This is the test I hope to get after the first of the year. I don't know anything about the company that runs the test, but they were recommended in a couple of books I read. The books also said that Medicare would pay for the test, so I am hoping that is the case.

    Here is a link to their website if you want to read it.

    http://www.exatest.com/

    Take care,
     

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