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Do Chronic Lyme Patients experience Post-Exertional Malaise?

Discussion in 'Other Health News and Research' started by GodGenghis, Jan 19, 2017.

  1. GodGenghis

    GodGenghis

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    Given how Post-Exertional Malaise is thought to be unique to ME/CFS and not experienced by sufferers of other fatiguing conditions i'm wondering whether there is research that has demonstrated that PEM is not present in these other conditions. Namely, i'm interested in whether PEM was ruled out as being present in chronic Lyme disease. Because if PEM *is* present in chronic Lyme disease, or Post-Treatment Chronic Lyme, then it would seem to be almost indistinguishable from ME/CFS, and thus may actually be the same thing, with the only difference being that those arriving at ME/CFS through a Lyme path had Borrelia as their triggering event rather than the more common viral trigger. I'm happy to hear any thoughts or references you lot can share on this.
     
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  2. justy

    justy Donate Advocate Demonstrate

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    Yes, and most of them have a dx of M.E. I have a dx of both. The Lyme, being untreated for so ong is believed to have led to my M.E, which I have had all my adult life to varying degrees.

    I have also spoken to people with Lupus who experience PEM. But that appears to be a contentious issue round here.
     
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  3. Maria1

    Maria1 Silence speaks volumes

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    @GodGenghis that's a question I've been pondering too.

    I recently got a 'strong positive' Lyme result from Armin Labs. I was quite shocked by the result and still don't know what to make of it.

    My PEM has definitely improved over the last year, although it's still there. I was diagnosed with cfs/me 4 years ago. I have had several tick bites over my lifetime, but I'm not convinced it's Lyme. Not convinced of anything with this illness!

    Like Justy, I think my Lyme may have been there a long time and then something triggered it into CFS/ME.
     
    Last edited: Jan 19, 2017
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  4. Skippa

    Skippa Anti-BS

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  5. Dufresne

    Dufresne almost there...

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    I had a very slow onset, suffering many of my symptoms since childhood. At 31 I began to develop PEM and was diagnosed with ME/CFS. At 37 I tested positive for Lyme and babesia (CDC positive for Lyme by western blot, and positive for babesia by FISH test).
     
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  6. Valentijn

    Valentijn Senior Member

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    Most Lyme patients don't have PEM, the exception being patients who have both Lyme and ME. The non-ME Lyme patients I've interacted with have absolutely no clue about PEM, and generally think that a bit of exercise is great for everyone. I've had to leave Facebook Lyme groups due to persistent failure of other members to respect the limitations of ME patients, and continue pushing exercise on us after being told to knock it off.

    I haven't read a lot of Lyme literature, but the Lyme expert Richard Horowitz recommends exercise as being helpful with Lyme, so I really doubt he's seeing many patients with PEM.
     
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  7. Grigor

    Grigor Senior Member

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    That's very interesting. Yet many Lyme patients I talk to do say they experience PEM. Or some sort of PEM. Maybe they just experience some kind of payback.
    And there are patients with ME symptoms who get diagnosed with Lyme......
    But that Horowitz suggest exercise..... That's interesting indeed. I also had to cut ties with a Lyme patient who didn't respect the PEM aspect. Blamed me for being horizontal all the time. Doing a little more will make you feel better etc. Grrr
     
  8. duncan

    duncan Senior Member

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    I do not know the answer to this. Great question, though.

    I suspect that most Lyme experts have no idea. I say this because of the reason Lyme experts usually recommend exercise, and it has little to do with deconditioning. It has more to do with oxygen in the blood, which Bb supposedly does not do well in, and this principle does not take payback into consideration.

    I am always a bit surprised how little the experts in these two diseases know about the other. I tend to think that like patients, clinicians and researchers in each respective area holds a little...disdain?...for the other. It's almost as if that the experts have so much invested in their own orphaned and controversial disease, that they have little to spare for any other.

    Definitionally, on paper at least, PEM should be restricted to ME/CFS. But all one has to do is visit Lyme patient boards to see many are hit with it, without even knowing its name. Perhaps they have Lyme in addition to ME/CFS - as many of us on PR do.
     
    Last edited: Feb 4, 2017
  9. Neunistiva

    Neunistiva Senior Member

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    Many people think that PEM means feeling tired after exertion more than a healthy person does.

    It might be a good idea to check their definition of PEM before asking if they have it.
     
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  10. Grigor

    Grigor Senior Member

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    From what I get is that people with Babesia do experience PEM similar to ME. But not sure
     
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  11. Neunistiva

    Neunistiva Senior Member

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    My point was not that other illnesses don't have PEM as a symptom. I have no idea if they do. My point was that very often people misunderstand what PEM is. And I don't blame them. It is difficult to describe.

    I've seen people on interferon treatment come home from work and be unable to leave the bed until the next day when they need to get up and go to work again. Someone might be tempted to call that PEM, but it's not.
     
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  12. Grigor

    Grigor Senior Member

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  13. TrixieStix

    TrixieStix Senior Member

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    PEM is also known to be caused by "Primary Billiary Cirrhosis". My gastroenterologist tested me for it because of this. Ruled it out.
     
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  14. Grigor

    Grigor Senior Member

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    Do you remember where you've read that by any chance??
     
  15. Valentijn

    Valentijn Senior Member

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    Probably in his book, "Why Can't I Get Better?"
     
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  16. Grigor

    Grigor Senior Member

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    Ok I saw this article before but missed it..
    Brainfog

    "Dr. Richard Horowitz, M.D., “Although we may address all of the other fifteen points on the MSIDS map and improve our health, without putting a proper exercise and progressive reconditioning program in place, those who have been chronically ill will have a much more difficult time maintaining their gains.” -Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease"

    http://www.tiredoflyme.com/4-simple...me-disease-that-can-make-you-feel-better.html
     
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  17. duncan

    duncan Senior Member

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    I have not read Horowitz's book, but, eh. Not sure this means anything other than a handing down of old advice. Speaking of which, do you know how many so called ME/CFS experts still advise exercise?

    The interesting thing about @Grigor 's quote is that the exercise advice seems to target deconditioning - which is different than what I am familiar with, i.e. Lyme patients need to exercise because oxygen and Bb don't care for one another.

    Maybe there is no PEM in Lyme. That may be even likely. But if no "expert" is looking because they are too busy looking at other stuff (including over their shoulders), then we cannot say for sure yet.
     
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  18. NL93

    NL93 Senior Member

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    I think there's a lot of chaos. I know of a few patients who have quite a classic ME/cfs picture with severe limitations in daily life, crashes after very minor exertions (PEM) etc. who "identify" as chronic Lyme patients. They talk on Lyme forums and try antibiotics that don't work. Some seem to be very misinformed about ME/cfs. (Not weird when doctors are misinforming you).
     
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  19. duncan

    duncan Senior Member

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    And visa-versa. ;)
     
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  20. msf

    msf Senior Member

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    Seems like the answer is: yes, some do, and those patients often end up being diagnosed with ME too. Since a significant proportion of forest rangers have evidence of Lyme infection, I doubt it precludes everyone from doing exercise. My own ME was triggered by Yersinia Enterocolitica, which is also one of the triggers of Reactive Arthritis; I haven´t heard of PEM being one of symptoms of ReA, but as Duncan suggests, I doubt the rheumatologists are paying much attention to the possibility.
     
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