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ME/CFS alert latest episode (exercise intolerance)

Discussion in 'General ME/CFS News' started by Sidny, Jul 2, 2018.

  1. Sidny

    Sidny

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    Latest episode with Dr. David Systrom.
     
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  2. Sushi

    Sushi Moderation Resource Albuquerque

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    This is a fascinating presentation from a researcher/clinician studying exercise intolerance in ME/CFS patients (and others). This interview touches on OI, POTS, autoimmunity, small fiber neuropathy, oxygen uptake in the muscles, mitochondrial dysfunction--in other words he looks at the problem across the board. :thumbsup:
     
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  3. raghav

    raghav Senior Member

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    I tried Pyridostigmine as advised by Dr. Jacob Tietelbaum in his book on CFS. It felt horrible ! Maybe I dont come in that subcategory of patients.
     
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  4. AndrewR

    AndrewR

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    Looking forward to the results of the coming research of this!
     
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  5. Silencio

    Silencio Senior Member

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    Is there anyone on here who have found mestinon to be helpful? I did a search through before and there didn’t seem to be great results from people on PR. Seems odd when he is saying it helps so many of his patients.

    This is a great interview.. he looks like a TV doctor which amused me. That square jaw!
    I’m so psyched for this Harvard center. I hope there is a clinical service, he makes it sound like there will be.

    I just can’t imagine putting myself through that cpet. The original cpet caused me to lose so much function that I’ve never regained, and this one seems like it would be just.. torture.
     
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  6. Learner1

    Learner1 Forum Support Assistant

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    Thanks for posting @Sidny !

    Yes, it didn't help as much by itself as it did when combined with the beta blockers, naldolol or propranolol.
     
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  7. Pen2

    Pen2 Support, Good Medicine.

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    This is very interesting!! I will be asking my Primary if he has/will look into Dr Systrom.

    I can tell he has researched some but there is so much more he could do. Educate being the big one! (My doc that is)

    Thanks @Sidny, keep us updated!

    :hug:
     
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  8. alex3619

    alex3619 Senior Member

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    I wrote this on FB -

    If you have ME and orthostatic intolerance, especially POTS, and any sign of small fiber polyneuropathy, I highly recommend watching this.

    They find right heart preload failure, low oxygen use, and over 40% with small fiber polyneuropathy ... but only tested in skin. (My comment is there might be patients with no skin neuropathy, but have neuropathy in internal areas including organs and blood vessels. ) These small fibers are critical in orthostatic regulation. They are working on treatments. They find their patients spend lots of money and 3-5 years getting a diagnosis, and specialists fail to find anything.

    They will be launching a double blind RCT using pyridostigmine, otherwise used in myasthenia gravis. This preserves acetylcholine levels. About 300 (mostly) women have improved, and they have objective evidence of improvement, which naturally leads to the need for a clinical trial.

    He is looking for multicenter and multidisciplinary research, all communicating across different specialties.

    This fits with the hypothesis I have been a fan of for a long time, that many diseases are unsolved while we lack the proper technology.
     
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  9. alex3619

    alex3619 Senior Member

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    Its also possible that how we need to be treated is different from how its used in other conditions. That is why proper clinical trials are needed, we do not know what it is doing. Its also possible it created complications, this drug has been implicated in Gulf War Illness, and not in a good way. However, again, we still lack facts.
     
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  10. Silencio

    Silencio Senior Member

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    @Learner1 Could you tell me how much those meds helped you when combined and how specifically they helped you? I am so torn about trying mestinon as getting sicker is always a big fear. Did they help primarily with OI, and did it get you back on your feet more?
     
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  11. Learner1

    Learner1 Forum Support Assistant

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    Before them, I couldn't stand still and talk to anyone, couldn't stand in line at the grocery store without collapsing, collapsed in 80 degree weather, and exercise made me dizzy and weak.

    I tried each one on its own and then both together. The pyridostigmine alone helped my symptoms, but didn't affect my blood pressure or heart rate, which tend to run high. Propranolol helped slow my BP and heart rate, but aren't as effective with the dizziness.

    For me, they work best together, taken 10mg each, 3x a day. The pharmacy kept flagging the interaction as they can slow the heart, but that was desired in my case and tge dysautonomia specialist says he has lots of patients on this combo.

    However, the propranolol tends to wear off after 4 hours so they switched me to naldolol which is the same molecule as propranolol, but longer acting.

    If you have a slow heart, I know there are other combos that work, like Florinef, saline, and other categories of drugs.

    The other gotcha is I have to have all of them compounded to avoid corn and milk allergens, which might affect how they affect you.

    This combo has improved my symptoms by 70%.
     
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  12. Sushi

    Sushi Moderation Resource Albuquerque

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    I don't either as I am already in hyper-parasympathetic mode! But most are the opposite.
     
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  13. Silencio

    Silencio Senior Member

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    Thank you! My heart rate is normal at rest and goes to 120 - 150 after 5 mins standing or walking. My BP is normal to low, but not sure what it does when my HR increases.
    I will talk to my doctor.. thank you for all the info!
     
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  14. voner

    voner Senior Member

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    here’s an anecdotal story. 20+ years ago, Long before I had any competent medical advice or knowledge of ME/CFS terminology, I used to call postexertional malaise, “the kickback the next day, etc”. Then I was prescribed Pyridostigmine for other reasons and I swore that it lessened “the kickback”. I stayed using Pyridostigmine for years, but eventually the gastrointestinal side effects just got so horrible that I couldn’t keep using it. It did nothing for neuromuscular pain but it sure seem to work for at least a while on PEM.... i’ve tried going back on a couple times and I just can’t handle the gastrointestinal side effects.


    here is a recent paper on propranolol or bisoprolo in combo with Pyridostigmine trial on POTS patients....

    https://www.ncbi.nlm.nih.gov/pubmed/29500811
     
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  15. Sushi

    Sushi Moderation Resource Albuquerque

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    Let me qualify that: I was definitely in that condition when comprehensively tested in 2006. Do you think it could change? I recently re-tried a drug that worked excellently for me at that time--it increased nor-epinephrine in the synapses. But it no longer had the same effect.

    I do take a low dose of propanolol in combination with another heart rhythm drug (flecainide--not at all recommended for OI or POTS but for Afib). Together these give me a resting heart rate of about 48 to 50 and I almost never get any tachycardia. But now I am re-thinking things and wondering if I could have shifted out of parasympathetic dominance?
     
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  16. Mel9

    Mel9 Senior Member

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    Could this drug make you feel bad for a period of time while the body adjusts?
     
  17. alex3619

    alex3619 Senior Member

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    I do not know. Possibly. This is not rare, I think. This highlights the need for ME specific clinical trials, because there is too much we do not know about this, or most drugs, in ME.
     
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  18. Wally

    Wally Senior Member

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    If anyone is interested in watching a seminar given by Dr. Systrom on 1/20/2018, related to the topic of this ME/CFS Alert Episode, it is available on Vimeo. It cannot be embedded here, but it can be viewed by clicking on the blue box below where it says “Watch on Vimeo”.



    (Note - this video was also posted in this thread where information about this seminar was provided by @Diwi9. See, https://forums.phoenixrising.me/ind...nraveling-the-contradiction-poll.57179/page-2).

    Additional threads are available on the Forum regarding Dr. Systrom and this subject going back to 2016. Just put his name in the search function and you will find a number of these threads.

    I found the blog written by Cort Johnson in 2016 and the comments to that blog to be very interesting.
    See, https://forums.phoenixrising.me/ind...and-fibromyalgia-explained.45547/#post-740429
    But there are also some really good discussions in a number of the other threads with special mention to @anciendaze whose contributions often provide some very good and thought provoking information.
     
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  19. Rooney

    Rooney Senior Member

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    For POTS, I was given propranolol first. Then I added Mestinon/py. a quarter increase at a time as my body brain adjusted. I'm sure I was wearing my Polar heart monitor to see benefit or not.

    I was hesitant to up the last of Mestinon to a full pill, but an OI specialist encouraged me as the lower dose was helping my pulse. It is not a long lasting drug, so easy to try. I take these two meds 3 times a day. The only ones I tolerate.

    I am classic post viral patient with no known autoimmunity per thorough workups.
     
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  20. Pen2

    Pen2 Support, Good Medicine.

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    There are so many different drugs mentioned here. I wonder if I need to look into these more.
    (It's also possible I take one or more similar drugs with a different name).

    I have POTS plus severe IBS so I wonder about changing my meds. (Although maybe what I'm taking is affecting my IBS like @voner )

    I take midodrine 3x/day, fosinopril because my BP goes too high, atenolol to slow my heart rate.
    It all seems so counter active but if I try to take midodrine less my OI reacts right away.

    Anyone else ever take any of these drugs? My BP is way too high now. I'm going to mention a different approach to my meds as you all have shared......always afraid of changes though.
     

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