Saturday, March 23, 2013

Anecdotal Evidence and Atrial Fibrillation

Important caution: Do not take more than 500 mg. a day of LCarnitine without a specific physician's order.  The patients who deplete L-carnitine are those who are vegetarians, those who take valproic acid, and those who are on dialysis. All others should supplement L-Carnitine with the knowledge and consent of their physicians. We know that too much L-Carnitine for those who are not deficient can cause coronary artery disease.

This post is so important, that I have enlarged the font and style of this writing so that everyone may read it with less effort.

 Do you know the difference between scientific proof and anecdotal evidence ?   In medicine, scientific proof isn't really proof, but evidence that a particular process, procedure, or drug is beneficial to the patient who is diagnosed with a particular condition.  Physicians, researchers and often now nurse researchers perform a study in which a physician selects patients for a particular study who have a particular disorder in common.   The physician running the study, for example,  will study patient responses to a procedure or a drug which the physician hypothesizes will be beneficial   For example, a physician may wish to study a new drug for Multiple Sclerosis. This would require that he and his researchers design a study, and recruit patients who have been diagnosed with MS. Then for a time, a double-blind study occurs. This means that a percentage of the patients receive the new drug. A percentage of them do not. The patients don't know whether they are receiving the new drug, or the placebo. The patients are followed over time by the researchers, and exams and bloodwork may be done to assess both the safety and the effectiveness of this drug.  Then the physician writes his conclusions in a paper and it is published for other physicians.  If four major centers in the world all study the same drug for MS and they all publish very similar results, then we have scientific evidence that this drug has some benefit in some patients who have been diagnosed with MS. Often studies have results that indicate that a particular drug or treatment is of benefit to a percentage of the patients who received the drug but not all. For example, a new MS drug might help people who are in the early stages of the disease, but might not perceptibly help those who have had it a long time.    Anecdotal evidence is when your sister tells you that she took D-Mannose for an early bladder infection. You buy some on Amazon and your chronic interstitial cystitis is much better.  Both you and your sister have anecdotal information as to the effectiveness of D-Mannose.  It may work, or it may work only due to placebo effect.  Some drugs are never studied because it doesn't make sense to spend $150,000 to $ 2,000,000 in order to study a compound which is fairly inexpensive anyway, and can be used fairly safely by individuals following package directions.  For this reason, a lot of strategies that may actually work, will never really be studied.  A few will actually be studied by nurses taking a research course in a Bachelors, Masters or Ph D program.
         This preface was important not only because I teach people things about medicine, but because in order to give you the information which comes next, I need you to understand what anecdotal evidence really is, before I pass my information on to you.

        As many of you who are regular readers know, in February a year ago, I laughed and my heart rhythm slipped into an irregular rhythm.  My belief that this was a rhythm called atrial fibrillation was confirmed at the hospital. I saw a cardiologist and had a work up and found that I have no abnormalities of my heart or coronary artery disease, but I do have a very strong family history for heart rhythm disturbances, especially atrial fibrillation.   The immediate solution was to adjust the dose of thyroid supplementation I was taking, and increase my prescription potassium. They provided a low dose beta blocker and provided me with a drug that I could take by mouth should I fall into the abnormal rhythm. (I carry that drug and only take it, if I fall into a-fib.)  Many times in the year which followed, I "fell into" a-fib.  Books say that no two atrial fibrillation patients are alike.  Some are tripped into atrial fib. from sympathetic stimulation, and some from parasympathetic stimulation.  For practical purposes, this means that some of us slip into a-fib when we are upset or highly stressed or after a physical stressor.  Others fall into a-fib while sleeping and are awoken from a sound sleep with a clearly abnormally beating heart.  I am not sure which category to which I fit.  I seem to have asthma as a predisposing factor, and I seem to wake up with a-fib.  I don't seem to get it when I am very active.  The meds are stop gap measures.  If a-fib ceases, then I will simply see my electrophysiology cardiologist annually.
       The eventual treatment of many of the people who have atrial fibrillation is a cardiac ablation.   Ablation is considered a minimally invasive procedure where an electrophysiologist-cardiologist threads multiple catheters through several arteries in the body. The cardiac conduction system is mapped, and when the group of nerves which comprise the focus or origin of the abnormal competing rhythm, it is ablated, which means, in essence, cauterized sufficiently to produce scar tissue, and no longer compete with the nerve system which generates the correct rhythm.  Women who have recurrent a-fib have higher rates in the long term of dementia and of stroke, than do men, who might be able to get along for years without the ablation.   In my own case, my doctor wanted to wait a year or so in order to correct endocrine reasons he thought might be causing the abnormal rhythm. I know that the likelihood is that sooner or later, I will need an ablation.  Statistically, at some point, I should have one.

       Of course, I would like to put off such a procedure for awhile.  One of my sons had one of these and one of my sons died at 12 1/2 of a heart rhythm disturbance, as did my Dad and my father-in-law.  I want to make sure that the best procedure is contemplated with the most information available, particularly about my own case.
        Not surprizingly, I do a lot of reading on heart rhythm disturbances, in part because they will likely someday kill me, but most of all to understand for my sons, the one who is here and is similarly afflicted, and the one who has passed. (I have two sons and a daughter who are apparently not afflicted.)  About two months ago I found something interesting.   A pharmacist was saying that she wished that before people went right to scheduling ablations that their physicians did a couple of things.

    1. Test RBC Magnesium
  (Low magnesium is a cause of arrhythmia and mine is always low. RBC magnesium tells you what is going on INSIDE the cells, in the intra-cellular space) Your doctor can order this. If it's low, your magnesium     should be supplemented. Your physician will order the correct dose which may be prescription.

   2. A trial of L-Taurine 
         (An organic acid broadly distributed in cells. Is in infant formula and is felt to be helpful to eye and nerves.) It also does much more. This is usually referred to as just Taurine.

 3. A trial of L-Carnitine       Many uses, please see link.

I also added one my doctor thought I might try:

4. A trial of Coenzyme-Q-10 
     As we age, the amount of Co-Q-10, an enzyme, decreases in our bodies. This is helpful in providing cellular energy production and has been used in heart failure patients. This is a prescription drug in Japan.
We know that atrial fib. is a rhythm disturbance which tends to occur as we age. Why not replace an enzyme which diminishes with age also ?  We know that certain drugs, even those given for hypertension may diminish cellular Coenzyme-Q-10 levels. Statins, for example, can decrease Co-enzyme Q levels as much as 40%.

   I have been using Taurine 500 mg., L-carnitine 500 mg., and Co-enzyme Q-10, 400 mg per day for two months.  Despite some asthma which should have thrown me into a-fib, I haven't had atrial fib.   I haven't even had the occasional fluttering I get sometimes prior to an episode. This may be placebo effect, because I would like to put off having an ablation.    What kind of information is this ?  Yes, it's purely anecdotal information.  Someone you know has tried this and it appears to be helping.  My energy level is up, and I am sleeping better.   It has not fixed my asthma. I am still allergic to cats, and I still have medical bills !   I think it may have helped to contribute to a more stable heart rhythm though, at least for me.
    The next time I see my cardiologist, I am going to ask to wean the low dose beta blocker, and then we will actually have a much better test as to whether these supplements have really helped me in avoiding a-fib or not.
      Before you purchase these from the internet at relatively reasonable prices, write these down and ask your physician if he/she have any objection to your trying these for a month or two.  If you do decide to try, then tell your pharmacist what you are taking because supplements of all kinds interact with OTC and prescription medications.
        Remember that every person on the Earth is unique and that even those who are considered to have the same diagnosis, have different co-factors and issues which makes them different from the "run of the mill patient".  Case in point, a person with atrial fib. and asthma will be treated slightly differently than someone with atrial fib. and an enlarged heart, or differently from someone with atrial fib. and anemia.  Always discuss supplements you are considering with your doctor.  Write your questions down before you see him/her.
         I am not foolish enough to think that I have dodged a cardiac ablation forever.  Perhaps my goal should be to be in better shape from a cardiac cellular standpoint, when I do eventually have one.
        I chose to bring this to your attention because it may help someone, despite being anecdotal information. You might wish to do some internet research on it before bringing questions to your physician.  Make sure you discuss with your physician before trying any supplements whatsoever.

Other posts on this blog which concern atrial fibrillation can be found at:

The best book I know of written for those with atrial fibrillation or their physicians and nurses is:

Beat Your A-Fib     by Steve S, Ryan Phd


Gorges Smythe said...

I'm glad these substances seem to have helped and hope they continue to do so. I think it's a shame that research isn't done on many things simply because there are no huge profits to be made by by the effort.

JaneofVirginia said...

I suppose it's still a good thing that these substances are available to us. I still think there are profits to be made and this would benefit people, which is, of course, most important. Thanks for your kind wishes, Gorges.

lotta joy said...

Reading white print on a black background is painful for someone with macular degeneration: which I have. But I hung in there and read every word. Oddly enough (and I do not believe in coincidences) my husband suggested trying Q10 to me yesterday. I am low in magnesium, but when I take it I get such bad headaches and indigestion I have to stop it after three days. Would you know why? But I WILL buy some Q10 tomorrow.

It's going to take forever, but I am going to follow all your links. You put such intense work into your posts. You are a marvel to me.

JaneofVirginia said...

Lotta Joy, You can highlight the entire post, using the left mouse, and this will produce a white background with blue writing which is easier, at least for our reader who is legally blind. This is what she must do.
The Co-Q-10 is very effective. Start slowly. I started with 100mg. and then have worked up to 400mg.
And you are correct, there are no coincidences.
With fond wishes,