The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Long QT syndrome? Dr Cheney's thoughts on heart?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by xrayspex, Apr 8, 2015.

  1. xrayspex

    xrayspex Senior Member

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    Hi can anyone remember if Dr Cheney felt that Long QT syndrome tied in with CFS issues? I know he felt there was some sort of hole in heart that isn't detected easily by standard medical tests. He felt the heart tied into problems with CFS, I am just trying to remember what he said about QT behavior with CFS.
     
  2. IreneF

    IreneF Senior Member

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    Long QT Syndrome is a potentially fatal genetic disorder of the heart rhythm. It has nothing to do with holes in the heart.
     
  3. barbc56

    barbc56 Senior Member

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    I have a close friend who has this as well as several of his family members. It is genetic and once he was diagnosed, other members of his family were tested. One daughter, both her children as well as his brother were eventually diagnosed.

    None have me/cfs.

    Barb
     
  4. Sidereal

    Sidereal Senior Member

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    Long QT syndrome has nothing to do with Cheney's ideas about heart problems in ME/CFS which he believes involve diastolic dysfunction.
     
  5. duncan

    duncan Senior Member

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    Technically, Long QT is more about the brain than it is the heart. The signal sent from the brain to the heart regulating its beat and pulsing etc is somehow disrupted, and the result is Long QT. Often times, patients with Long QT have healthy heart muscles - it's just that the instructions the heart receives to do its job are being interrupted. Although there are several types of Long QT, it is generally treated with Beta Blockers and frequently a pacemaker - both to act as a back-up to that faltering signal.

    I do not think it is related to ME/CFS. My wife has Long QT. She was diagnosed 30 years ago, and she does not have ME/CFS.
     
  6. ukxmrv

    ukxmrv Senior Member

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    I think that the "hole in heart" you may be thinking of is called a PFO. I heard Dr C speak at the iIME London conference a few years ago and he included that in his talk. The reason I stuck in my mind was that my other-half has a PFO (just coincidence and he doesn't have ME).

    http://en.wikipedia.org/wiki/Atrial_septal_defect
     
    Last edited: Apr 9, 2015
  7. Eeyore

    Eeyore Senior Member

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    Long QT is very different what Dr. Cheney describes.

    He is focused on diastolic dysfunction, which relates to impaired filling of the left ventricle of the heart, causing (per Cheney) atrial dilation and cavitation.

    I have been tested for diastolic dysfunction by an excellent local cardiologist (2 actually) and both said I did not have it. It may be that Cheney's tests are more sensitive - I know he has invested in an excellent echo machine - or that his criteria are unusually loose. He hasn't published the data so we cannot know. We'd need to see patients vs controls, with blinded echocardiographers. Cheney focuses a great deal on IVRT (Isovolumetric Relaxation Time) - which is not a standard measure for diastolic dysfunction. That doesn't mean Cheney isn't on to something, only that it's hard to really know.

    Cheney has noted a very high percentage of PFO's (patent foramen ovale) in his patients. this is a reopening of a natural hole between the atria. I believe the theory is that increased pressure in the left atrium causes dilation and forces a left to right shunt of blood, with the pressure re-opening the closed hole. This relieves pressure in the left atrium but increases it in the right, where it is normally much lower.

    A PFO may be obvious on echocardiography in some cases, but often, a bubble contrast study is needed. These are rarely done. Cheney may, again, be onto something, or may simply be detecting a common variation more often through more sensitive testing. Hard to know.

    Long QT is something you can check for on an EKG. Look at your QTc - it's a good general indicator of whether you should be worried about long QT or not, although it's not 100% sensitive from a single resting EKG. Any competent physician or cardiologist can diagnose this condition if asked - it's well understood and well described in the medical literature. There are also a number of SNP's on 23andme that predict it, although I'm not certain what percent of cases that would detect. QT prolongation is not necessarily genetic - it can also be induced by a number of medications. One common example is macrolide antibiotics (erythromycin, telithromycin, clarithromycin can all prolong the QT interval - the jury is still out on azithromycin, which is likely much safer but not risk free). Fluconazole and other antifungals can also prolong the QT interval.
     
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  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have a PFO though the only cardiologist who found it was the one who actually wrote the textbook on echocardiology--just meaning that it is often missed. I was given an explanation that sounds like what Eeyore wrote above, though I don't remember the details. Take home? Forget it, no interventions are appropriate (or safe) and it will likely normalize as it is a natural hole, meant to close at birth, but sometimes partially opens due to pressure differentials.

    Sushi
     
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  9. Sidereal

    Sidereal Senior Member

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    Do you have migraines, @Sushi?
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have had periods of migraines throughout my life. They were helped most by dealing with nasty gut bacteria--after taking the appropriate abx, no more migraines.

    Sushi
     
  11. Eeyore

    Eeyore Senior Member

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    @Sushi - Did you have a bubble contrast test? It's usually hard to detect a PFO.

    I don't think the PFO is seen as being the problem. I believe that Dr. Cheney would say that the PFO is present due to an increased pressure differential. i.e. The left ventricle does not fill, so the pressure in the left atrium increases. This causes dilation of the left atrium. Should the pressure get high enough, the hole will open, and you have a left to right shunt, which relieves the pressure.

    The idea is that the PFO is not so much a cause of symptoms (many normal healthy controls have a PFO - about 25% iirc), but rather an indication of diastolic filling abnormalities. Physiologically the idea is plausible.
     
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  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    No, but my cardiologist is a specialist in echo and directed the tech. No other cardio has seen it on my echos though. He didn't pursue it as he didn't think it was anything to worry about.
    That is the explanation I was given.
    A few years ago it was "the fashion" to surgically close PFOs in ME and dysautonomia patients. That didn't go well at all!

    Sushi
     
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  13. xrayspex

    xrayspex Senior Member

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    hey thanks for all the info folks. i used to know this so much better some years back.....I had forgotten some of this so thanks for refresher course. ---but he has written somewhere about what he feels distinguishes fibromyalgia and cfs relating to QT length.

    and because it is all loosely related to heart i was wondering if all related. I am thinking about it because I have over the years had ups and downs with the oxygen hunger and have often suspected that certain meds make it worse. I have wondered sometimes if certain thiings blow open a hypothetical heart hole and then it can take years to heal up.

    and then in early march i got pneumonia this year for first time and took zithromax 3 day 500mg day for first time--felt weaker after started taking it but it cleared up the cough and lungs and sweated out who knows what. about 8 days after that felt better thn in years. but then about 8 days after that bad headache cameon and i got fixated on that my body needed it--got 5 day pak from dentist for a root canal tooth that was hurting before zpak and did it again finishing last friday. still have headache and this time got scared it did something bad to my heart cus started getting middle of nite palpitations and oxygen hunger have not had in long time this bad at times. its starting to subside and i am hoping i go back into a good phase again once it clears out bit more but i do not think i will play around loosely with it again for awhile. because i read about the studies where zithromax can cause heart attacks and arrythmia, i know its rare, but since i already have rare problems dont want to tempt fate. too bad cus i was thinkingit may be miracle panacea i have been searching for.

    it just complicated my understanding of my cervical spinal problems tho cus i am confused on why it would reduce spinal pain so much. rhemuie says maybe just cus its powerful antiinflammatory but nothing has ever worked this well for pain before.
     
    Last edited: Apr 11, 2015
  14. IreneF

    IreneF Senior Member

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    I thought it had to do with mutations in the heart muscle that lead to delays in repolarization of the sodium and potassium channels that trigger the heart to contract.
     
  15. IreneF

    IreneF Senior Member

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    Anything that keeps your brain from getting enough oxygen will cause you to get CFS-like symptoms of brain fog and fatigue, but you won't have PEM.
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    @xrayspex Here is a website of which meds carry the greatest risk of prolonging the QT interval: https://www.crediblemeds.org/

    It used to be called qtdrugs.org (or something like that) but they changed the name and format. Many antibiotics can do this including fluoroquinolones but I have read articles that azithromycin (z-pak) is the worst for triggering heart attacks from prolonging the QT interval. I do not have a link for this but it should come up in a Google search. And it is totally different than the issues that Dr. Cheney reports (diastolic dysfunction and PFO.)
     
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  17. Eeyore

    Eeyore Senior Member

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    @xrayspex

    Out of all of the macrolide antibiotics, azithromycin is likely the safest, although some studies have linked it to QT prolongation and arrhythmia.

    One of the major concerns is a type of arrhythmia called tdp or torsades de pointes, which can be fatal. Interestingly, azithromycin seems unique in that it does not have the same tendency to induce TDP as other macrolide antibiotics. Functionally, it induces a different pattern in the monophasic action potential of the cardiomyocyte, even with similar QT prolongation to other macrolides.

    While the evidence does suggest azithromycin is safer, I wouldn't say it's risk free - or that any macrolides (or drugs for that matter) are. There are definitely some case reports of azithromycin causing arrhythmia, often in individuals with unusual susceptibility - not not necessarily always. Remember that azithromycin is one of the most prescribed antibiotics out there right now, so there may be more case reports just because the drug is more widely used in the US now.

    Divergent proarrhythmic potential of macrolide antibiotics despite similar QT prolongation: fast phase 3 repolarization prevents early afterdepolarizations and torsade de pointes. http://www.ncbi.nlm.nih.gov/pubmed/12235254

    Azithromycin Can Prolong QT Interval and Suppress Ventricular Contraction, but Will Not Induce Torsade de Pointes. http://www.ncbi.nlm.nih.gov/pubmed/25367413

    Also interestingly, there was an article published about the effects of azithromycin on chronic fatigue syndrome.
    http://www.translational-medicine.com/content/4/1/34

    This study showed a beneficial response to azithromycin in about 60% of patients, with some returning to 80% of premorbid capacity. It was a second line drug when response to acetyl-carnitine was deemed insufficient.

    This was a retrospective study and not blinded, but still interesting. The macrolide antibiotics are known to have potent immunomodulatory effects. This paper suggests that it functions by altering il-1beta in the brain, in particular with regard to glia. This is not shown - it is only a theory - and I have not seen any follow up research confirming the results.

    Azithromycin does have a number of potent immunomodulatory effects. If you take a quick look at pubmed you will find a lot of articles on it. These effects may be beneficial. However, in this case I suspect that any cardiac side effects are related to its action at the hERG potassium channels in the heart (hERG is actually a gene coding for a subunit of a delayed rapid inward rectifying potassium channel present in the heart that plays a key role in the repolarization of the cardiomyocyte after contraction - hERG stands for the "human ether a go go" gene). hERG channels are the most widely studied potassium channels when it comes to drug induced QT prolongation.

    Personally, I noticed a nearly instant and marked reduction in arrhythmia when I took azithromycin for a time. The mechanism may be immunomodulatory or it may have to do with it's effect on the cardiac action potential.

    This paper shows that not only do very high levels of azithromycin NOT induce tdp, but levels of erythromycin that do induce tdp, when combined with azithromycin, no longer induce tdp. i.e. Azithromycin actually prevents tdp.
    http://austinpublishinggroup.com/vascular-medicine/fulltext/ajvm-v1-id1006.php

    Again, this appears to be because azithromycin prolongs the resting portion of the cardiac action potential, creating a rectangulated potential as compared to the triangulated potential of other macrolide antibiotics.

    Azithromycin may have antiarrhythmic activity in some cases - and I believe in my case that it did. However, there are case reports of cardiac risks with azithromycin (roughly comparable to ciprofloxacin, but 2.x fold greater than amoxicillin, which has no known effect on the heart), so caution is still warranted, especially in a patient with known QTc prolongation or with polypharmacy.

    This is one of those things you need to talk to your doctor about before trying for ME - which is obvious since it's a prescription drug anyways!
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    @Eeyore Can I borrow your brain some time (not joking!) and your knowledge of these meds and cardiac issues is incredible. I may have to ask you some questions at a later point when I am feeling better. I think I missed your first post but welcome to PR and I can tell that you will contribute a lot! :star: Although I am sorry (like everyone else) that you are sick enough to have to be here :aghhh:.
     
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  19. duncan

    duncan Senior Member

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    IreneF, it appears you are right. Might it have to do with the type of Long QT? My understanding is many LQT patients, if not most, have two cardiologists: an electrophysiologist cardiologist (an electrician) precisely because of the eletrical signal component, and a normal cardiologist (a plumber). My wife has two, so at least she is typical in that sense.

    Your description appears to be correct in relation to the larger LongQT community. I may have generalized my wife's specific type - and cause - of LongQT to the broad community. Or maybe cardiologists have learned much more about the syndrome since 1983, and nobody informed us. My bad.

    Indeed, my wife was told recently she had an atypical form of LQT. Things have changed in the 30+ years that it's been since we sat down with one of the leading experts back in the early 80's. Many more specific gene mutations and categories recognized these days.

    I just assumed her LQT was like everybody elses - or rather, everybody elses LQT was similar to hers. Sorry for my sloppy error.

    So now I am even with my wife as she still believes most Lyme patients have swollen knee joints. :)
     
    Last edited: Apr 10, 2015
  20. xrayspex

    xrayspex Senior Member

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    Eeyore-thanks for all that info,it is reassuring. I am going to read that CFS study you linked.

    (I can't find source for previous info had re Cheney and ideas on Q T lengths etc but I did find these links that has different and related info by him and a number of sources, I will keep looking for more info regarding QT stuff )

    http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=062748;p=0

    alright and I found a citation in series of slides by Cheney online regarding what I was thinking of---that he sees a difference with QTc between CFS and Fm etc --its in a slide in this series:
    http://www.cheneyresearch.com/wp-content/uploads/2009/08/17253372-A-Complete-CFS-Overview-P1.pdf

    he cites study by Naschitz J. et al Electocardiographic QT interval and cardiovascular reactivity in Fibromyalgia differ fromCFS " european journal of internal medicine May 2008 ( 19) 3 187-191
     
    Last edited: Apr 10, 2015
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